Mom's life with Aspies

Moving Forward...

2011-08-11T07:48:00.000-07:00

I wish I could write on this blog more consistently. Life is so busy!
Well.. my sweet and quirky 5 yr old girl was also just diagnosed with Asperger's. I have been suspecting that she was on the spectrum for years.. and thanks to her fabulous developmental pediatrician, we finally have confirmation of that fact. Does it seem strange that I am more relieved than saddened by this diagnosis? What can I say? When you have a hunch, and that is your explanation for all the behavior that you see, it is almost a relief to know that your hunch was right. If I was wrong, what would explain all the sensory sensitivities, melt downs, "rude" comments, and quirks? Having my son with Asperger's has helped pave the way.. I am feeling more fluent in the language of Aspie.. it does not feel like a foreign land anymore.. I see familiar landmarks, and know how to navigate around them. Of course they each have their own unique struggles and differences, but there is something familiar about it. So, this time around diagnosis is not scary, or confusing.. It fits.. and confirms..
In other news.. I have decided to home school the kids this year. We have been homeschooling my sweet 8 yr old daughter for a couple of years, but with my 5 yr old starting Kindergarten, it's boosted our class roster up to 2... and then, I made the decision to homeschool my 10 yr old Aspie.. He has been going to a school specifically for kids with Asperger's and ADHD. Initially it was the perfect fit for him, and I felt like it was a safe place for him to develop. Something changed over the years though, and last year he begged and pleaded not to go to school. It was his constant chorus.. He talked about kids calling him fat, and how he had no friends. He spent many days in the principle's office and even more with "working" recesses. (due to poor impulse control/talking too much). My heart ached to see him struggle. So, we are venturing out into new territory, and I must admit, I feel a little anxious about how it will go. My sweet son though, feels completely relieved, and I have peace. I spent many days/hours praying about this decision, and in the end feel like it was absolutely the right thing to do.

So God is good, and he carries us on. The hard times press us, but he doesn't let us drown. Just today My son told me "I would give my life to be an average kid for just one day". This breaks my Mommy's heart. It is a wish he has that I have no power to grant. A longing he carries that shows how he feels about who God made him to be. I pray that this year, with home school, prayer, and love, that I can boost his self-esteem, and help him to see the unique traits that make him, and his sister, and all of us special and valuable in God's eyes.. Often we don't see what God sees. The creator is building a masterpiece, but all we see is the small detail of the here and now.. he knows how this works into the finished product, and we just have to trust that He sees the big picture, and as He has said "It is Good."
Blessings to all.. hope to be back sooner rather than later :) .

Trying to Stay Positive....

2010-09-30T13:05:00.000-07:00

Sometimes I find myself wallowing in a pool of self pity.. Feeling sorry for myself.. and just soaking in my martyrdom. Please tell me I am not the only one who does this! It's been a particularly trying few months with my Aspie son... His mood instability and volatility have been especially difficult for me.. I think about him when he was my sweet eccentric bright little 3 yr old.. and I try to hold onto that sweetness, when I am faced with the more violent side of my boy. He is still that same sweet little guy at heart.. I know he is. His heart is golden. And really he doesn't want to have these struggles any more then I want him to. But sometimes when all you are faced with are the "problems".. the violent outbursts, the disrespect, the reports from teachers, the name calling, the crying, the hysterically fast talking.. it's EXHAUSTING.. and I feel myself wearing thin sometimes!
This is when I get stuck in my mud puddle of pity.. "oh.. poor me.. I'm all alone.. I'm tired.. no one can understand how I feel.. blah blah blah".. (sad.. right??) Well.. I then have to give myself a pep talk. This usually involves me thinking about God, praying, and asking Him to put some perspective back in my life. I mean.... it can ALWAYS be worse! So.. I'll try to look on the bright side. I know that God says his strength can be made perfect through our weakness.. We tend to look up most when we are down.... and above all, as my wonderful husband reminded me today: "As for God, His ways are perfect". Isn't that all I need to know? As Isaiah 43 says: "Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you." This has been my favorite set of verses for sometime now.. Notice.. he never says: "you will not have to go through waters and fires..." He says we WILL go through them- but that they will NOT overtake us.. he WILL be with us through them, and we will will in the end.. So.. I'm holding on to that victory.. claiming it as my own.. and will keep trying to look up to the one who made me and has perfect plans for me!

Denial

2010-09-16T13:15:00.000-07:00

UPDATE to following post: Not that it changes much of anything, but his Dr. is currently stating that the bipolar is a misdiagnosis and she says he has only Asperger's/ADHD/OCD... (for whatever that's worth.. :)

As a Mom of a child with so many "co-morbid" diagnoses.. I find sometimes, that I stick with one I like.. maybe the one easiest to deal with, the one with the least social stigma....so I gravitate towards Aspergers. When I have to describe my son's struggles, I tell the greater outside world, Oh he has an autism spectrum disorder.. This generally garners a sympathetic, somewhat understanding response from those I share this with. This is my comfort zone.. my approachable struggle.. One I have embraced.. worked through.. celebrated.. accepted...
But.. I think the hardest diagnosis for me to accept is Bipolar.. ugh.. I find so often I bury my head in the sand on this one.. Bipolar has sooooo much stigma and negative connotation.. I mean it's a *mental health* disorder.. don't we all shrink away from people that are "mentally ill." That term just strikes fear in people's hearts.. oh.. don't trust him.. he's mentally unstable.. oh he's "psycho"... I admit.. I am "one of those" who have had that natural response to finding out someone has a mental health disorder.. There is a natural leeriness.. a caution.. Mental illness strikes at the essence of a person's being.. their mind.. their personality.. who they are.. how they are perceived.. This is what is so heart breaking.. my son has to fight to do the simplest things.. his moods swing like a mad pendulum, up and down, back and forth, completely unpredictable.. that must be terrifying for him.. and frustrating for me.. One moment laughing hysterically, giddy, the next crying on the floor like a baby because something didn't go right.. the depression.. the lack of self worth.. the violence.. the threats of violence.. the threat of self harm.. what do you take seriously?? To the rest of the world his behavior may seem bratty.. like he needs a serious dose of discipline.. but it is soo much more.. discipline.. makes matters worse.. when you are dealing with a volatile, potentially explosive child, discipline only exacerbates the situation.. what do you do??
But close your eyes and pray for strength to ride the emotional waves.. to be the lighthouse guiding your child back to safety..
The Bipolar side is what hurts the most.. To see my son struggle.. to wonder if he will ever be safe to live on his own.. or wise enough to? To never be sure of what is possible.. I trust his heart.. who he is inside.. but I fear sometimes, that his mental health, his instability is what is controlling him.. and anything bad is possible.. not because he desires to be bad.. but because his impulsiveness and mood swings take over..
So.. I have been working with myself this week.. trying to look the "bull" in the eye.. (not my son.. the word "bipolar") I have been trying to research it more.. figuring that turning my back to it's existence doesn't make it any less present and real.. Trying to step away from the denial.. and face this beast my son has to live with.
I know some parents of special needs kids embrace their kids specialness. Saying "this is who they are.. and I love them the way they are.. and they should be accepted as they are".. I have to admit.. I love my son.. I love what is in his heart.. but I hate that he has to struggle with his mind so much. I see the pain it causes him.. the guilt he feels, how he hates himself after a violent meltdown.. how he doesn't fit in, how he is looked down upon by neighbors, how he has to fight sooooo hard just to move and live and breath in a world that he doesn't understand, while having his emotions do tailspins.. To have to struggle against Asperger's and bipolar?? How do I rejoice in that? I love my son.. every last square inch of him.. but I hurt so deeply for him in his struggles.. I feel like bipolar is the beast that rides on his back. I don't like it.. I don't embrace it.. I have difficulty even accepting it.. because it is hurting my son.. I feel sometimes like it is seeking to destroy him.. And I wish it wasn't there...
I've got a long way to go.. and I know that only God can get me there.. So I'm clinging to him in this ship on an ocean of choppy waves.. riding out the storm the best I can.. loving my son...praying he has a chance to shine.. And trusting that God has a purpose for him... because he promises he does.. ♥

Expectations

2010-09-06T08:29:00.000-07:00

As a parent of Special needs kids expectations are often challenged and rearranged. One example: Birthdays. As a parent you expect a Birthday Party to look a certain way. Certain things must happen, and be done in a specific way. We have invitations, plans, Birthday cake, presents, large family/friend gatherings. This is not the way things have worked out with my aspie son. He had Birthday Parties at first.. maybe up until he was 6.. but every Birthday Party would end with him dissolved into tears, and hiding in his room. The stress of interacting with other children, the noise, the let down when a present wasn't what he expected it to be were completely overwhelming. One day he finally explained to me he didn't want a party. He didn't want friends over, he didn't even want presents. Just money. My "mommy gut" told me no way.. this kid needs to experience a birthday party, have the friends, presents, the "normal American" celebration. But my mommy heart told me that hey, after all it is HIS birthday.. it is supposed to be His day, where he feels appreciated, and celebrated. So why make him miserable??
So that year we had NO party, no cake, no friends, no family. Just my aspie and me.. and money from everyone who wanted to give a present. And he loved it. He bought what HE wanted, he spent special time with Mom... and he had a wonderful birthday. That is how birthdays went for a few years. This year he surprised me and said he wanted a party. But.. his party turned out to be "family in house only".. no grandparents, no cousins, aunts or uncles, just our household. He, of course, had to be the director of the affairs.. he wanted only a miniature cake, he wanted it to happen before school started (1 week before actual birthday) and he wanted it to be in the morning. And as long as everything went according to his plans he had a wonderful time.
Being a parent of a special needs kids requires an inordinately large amount of flexibility. My boy was not blessed with the gift of flexibility. He is rigid, and has all these rules he's created. But that is the only way he can understand the world, the only way his anxiety is manageable. Thank goodness the Lord made me flexible!
But isn't that how God works, He doesn't place us in a situation without adequately preparing us for it. We don't even know we have the ability to cope with it, we feel completely overwhelmed.. and yet, there HE is.. holding us, handing us what we need when we need it. Need a little patience? Turn to him, He's got it ready for you.. flexibility, understanding, love? Yep.. those too. HOPE. That may be the hardest sometimes, but He's got that too.. "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." (Jer 29:11). This was one of those verses God gave me in the darkness.. it brings hope because I know he's not only saying this to me, but to my son as well.. So.. even though life may not be what I expected, Birthday Parties, and everything needing adjusted.. I can rest in knowing God's plans for us are good.. even if it is not what I had planned.. but I think his expectations were better then mine! "For just as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts." (IS 55:9). Although I don't know what the future hold He does.. and He promises it is good...

Conversation with God

2010-09-02T11:56:00.000-07:00

I have been having a difficult few months with my son, and it all came to a head yesterday, when truths about my son's behavior were brought to my attention. It was one of those earth shattering moments, where your perception of reality is turned upside down and you have to face a new, more unpleasant one.. Well, I went for a run, to work on my anger and frustration, and ended up sitting in a field at the end of the street where I had this conversation with God...

Lord- Why????

Why not??

Because I love my son!

I love him too.

Because it hurts!

I hurt for you..

It's not fair!!

Life isn't fair.

Lord.. why does my son suffer for the bad choices I made??

Why did MY son have to suffer for them too?

Will it ever get better??

"I will give them a crown to replace their ashes, and clothes of praise to replace their spirit of sadness" (Is. 61:3b)

I guess God wins.. which isn't surprising..

4th of July with my Aspie son

2008-07-07T15:52:00.000-07:00

Tonight was a painful night for me as the mom of a "special" kid. Often I try to see my son's uniqueness as a blessing. He's so smart and has so many amazing things to offer this world. For the most part, at home I can forget his differences. He is his "normal" self. I know he is different but what I see most at home is his behavioral difficulties: his rigidity and inflexibility that turn tiny changes in to major issues, his catastrophic thinking that dramatize anything not going according to his plans, his need to control that makes the smallest of requests from me impossible challenges, his sensory sensitivities that turn him into a raging mess. These are all business as usual things for us at home. But tonight, I saw another side to the story. The socially akward and painful side.
We went to see fire works at a public parking lot in the town next to ours. The van that pulled in next to my car was filled with the three most neurotypical boys you could hope to find. Two of the boys sported hip mohawks, and all three walked with an air of confidence. They tossed football and wrestled in the grass together, making the perfect picture of "boys will be boys." And then there was my son, who's greatest joy was in his newly purchased "Zorbeez" towels. He neatly folded them and carried on a lecture, that no one listened to, about bubbles, dynamite and fireworks. He arranged his bubble supplies in a neat row, all pristinely placed in their assigned spots.
The three boys did eventually find their way over, purely out of curiosity. They stared in confused silence as my son rambled off words a mile a minute and proudly showed off just how much water his "zorbeez" towels could hold. As they got bored with watching, the youngest of the brothers started to flick all of my son's perfectly arranged bubbble supplies out of place, just to watch the agitated reaction he could get. This episode ended with my son loudly bursting out that he would tell the boy's mom if he did it again.
The saddest part of all this is how desperately my boy needed to be liked by those boys. He followed them, stared at them, butted into their conversations and play, and tried to show off with his bizarre and hyper humor. In the final painful climax of the evening the eldest of the boys said "Your'e strange", and ran off to sit with his mom.
My son's already delicate sense of self shattered into a million pieces. He marched around angrilly calling himself a "stupid, pathetic waste". (his favorite self-descriptors as of late.) He kept saying he wanted to kill himself and wished he'd never been born. He was furious that he had not asked me to give him his medicine before we left home, stating that because he had been hyper he lost his "best friend".The sad truth of course is that if he had taken his medicine his hyperness may have been less, but his oddity would not be, and the ultimate outcome would have been the same.
The whole ride home I feebly attempted to gather up the pieces of my son's self-worth. I explained that any friend worth having would like him for who he is, that I loved him, and that God loved him and had a purpose for his life. I reminded him that God had a purpose for other aspies like Einstein, Edison, and Newton. (all heroes of his since science is his special interest.) Eventually my son was distracted enough to stop wishing himself dead, but I continued to feel his pain.
Seeing him next to all the neurotypical children his age made me see how glaringly different he is. He however looks "normal", with no obvious physical delays or deformities. He is a blonde haired, blue-eyed, good looking 7 1/2 yr. old. He is not different enough for understanding from the public eye, only enough to open himself up to the hurt of rejection.
His one quest in life is to find a friend. One who can be forgiving of his rigidity and controlling nature. Someone who enjoys science as much as he, and would be willing to listen to his science lectures, so he can stop lecturing the air. This is what I pray for daily and wait for with hope. He has so many good qualities. He is creative, smart, and when push comes to shove, he really is willing to help. He's a strong leader. He's a blessing, my blessing! If only everyone could see the beauty that lies beneath his rough exterior.
I suppose that is what all mom's want for their kids. For the beauty of their speicalness to outshine their differences. This is what we crusade for, with speech and occupational therapy, counseling, IEP's and unconditional love.. Praying that it will all pay off in the end.
Until next time...
Kristy.