Wednesday, March 4, 2009

Our journey with Parker....

I should probably never do a post like this, especially on a bad day. But it's when the emotion is there. Parker was diagnosed with Asperger's ( a form of Autism) when he was 3. Since then, it's been a journey, one of which I never expected in my life. His main issues are social, behavioral, and sensory. It sounds like a lot, but knowing what we could be dealing with, it's good it's just this stuff. The trouble is, he looks normal. He sometime acts normal. So, therefore, people expect him to be normal. He's not. We are OK with this, but it's very tricky to help him fit into a normal classroom and a normal world. To just be able to relate to those around him in a healthy way takes a lot of work. We have amazing support for family, friends, teachers, therapists, and his few good, loyal friends. I have gotten through this for this reason only. 

The good, the bad, the ugly:

The Good: Trying to be positive. 
*Brilliant child, though getting him to focus on homework is a challenge. 
*He is loving, which is not a characteristic of autism. 
*He pays attention to details I would never notice. I have really enjoyed this during scripture time. He sees details I would never get. 
*Parker is an amazing musician. Perfect pitch without even thinking. His new hero is Liberace (he saw an old Muppets dvd with him). 
*Extremely creative
*Because of Parker's sensory issues, we don't stand in lines at Disneyland. We earned it.
*Amazingly sensitive to the Spirit. I'm in awe of this.
*And cute as a button.

The Bad and the Ugly: 
*He cycles...he has super weeks, and then for no reason, spirals into horrific behavior, nervous ticks, and he's not Parker. We have charted diet, sleep, changes....can't figure it out. If we could, we could cure autism. He's in this phase now (groan). 
*No insurance coverage for Autistic therapies...this is a huge bite. Plus, you name the therapy, I have tried it. Cranio-Sacral, Energy workers, Social Skills classes, etc, etc, etc.
*Medication...this has been a roller coaster that makes me ill. We had such a bad run with some medication last year that I cry when I think what it did to him. He's now on a pretty good mix for his anxiety and nervous ticks, but I'm too afraid to deal with the ADD aspect of it. No more meds. 
*The huge amount of time it takes from my other kids. I feel bad for Quinn and Emi. They always obey and accomplish their tasks, but I have to focus 100% on Parker to get him through.  I hate dragging them to therapy week after week to sit in a waiting room.
* Rude, ignorant people. Bill and I try to educate people about it because a lot of people don't know about AS, but I have encountered more RUDE and AWFUL people concerning my son. We have also encountered true angels, so I guess there is a flip side.  
*Knowing your son is not "part of the gang" at school and church. He used to do sports with the ward kids, but he struggled. It's hard to have the 1 kid that doesn't participate. 
*And yes...the embarrassment. This is my biggest fault. I embarrass easy, and it's hard when Parker has done something mean to another kid or inappropriate at school. It's hard for me to hold my head high when he does, but I do. 

Bill and I are very social people. It's a mystery to me why I was given a child who has no sense of social graces and has no need for other people. However, the other day, he was nervous for a playdate with an old friend. He was in tears.....and I was actually able to calm him down and give him good ideas of what to do. He was so happy. This was the first time in years I felt like I was supposed to be his mom. Believe me, this post could go on FOREVER, but let's not do that. I've ranted and pity-partied enough for one day. It's cathartic to write this down. One day, I may forget how it was. Some days, I hope I do.


kjirsten said...

Oh Liz, this post made me cry. I feel for you. What a special child . . . and what special parents to have him sent to you. I'm sure it is hard a lot of days, but your courage and attitude are so inspiring. My nephew (8yrs. old) also has Asbergers, and I have listened to, and cried with, my sister-in-law many times. Such a bitter-sweet with her son also . . . so bright and kind, but painfully awkward sometimes and misunderstood. You probably have a great support group, but if you would ever like to talk to her, let me know. I'm sure that she too, would appreciate talking to someone who TRULY understands. I think you are amazing Liz. The perfect Mom for such a special little boy.

Monika said...

I'm crying too. We love Parker so much. He means so much to our family and especially David. Sorry things are so hard right now. We will continue praying for you guys.

Karen said...

Sweet Liz. You just keep holding that head up high. The people who matter accept and love the whole package, and those who can't... don't let them matter. All you can do is the best you can, and some days if it feels like your best is less than on others, that's okay! Please know that you can call me anytime that your other kids just don't want to go to the appointments and I can take them, or if you ever just need an extra ear to listen or shoulder to cry on... You don't have to do it alone.

brooke said...

You have me in tears. I honestly can't think of better parents to help Parker and deal with his issues. He is a DARLING little boy and it must be so heartbreaking to see him struggle. Please Please Please bring Emi and Quinn over to my house when Parker goes to therapy. I don't go anywhere anymore and we would love to have them. Emi came up to me at school yesterday and said hi. It was the cutest thing ever.

Cindy said...

You are a Mother Warrior and sometimes you just want to be you. It's hard sometimes to continually fight this neverending uphill battle where you feel very few are on your side. Sometimes it would be nice to be able to wear a T-Shirt that explained his behavior so that you wouldn't have to....sometimes it would be nice if you just didn't need to explain anything and you could just curl up next to him and love him for EVERYTHING that he is....though we are not on the same boat on this journey I feel like our paths are paralell. I don't know how it feels to have a son with Aspbergers, but I do know how it feels to be a Mother Warrior and every emotion that goes along with it. You are Brave, you are Powerful, most of the time exhausted.....but you can do it!

Pan to the 8th said...

I so love you Liz! You have the biggest heart and even though you may not feel it all the time - you are such a strong beacon to all of us around you.

Keep on keeping on.. we're all behind you!!

Marrdy said...

Liz, you brought me to tears. you are an amazing mom. I feel for you that you have encountered people who would hurt you. Parker is a sweet little guy and during those down times I'm sure it must be the hardest thing in the world. But what an amazing trade off to have a child who is so in tune with the spirit and can see the many things that the scriptures hold. I'm sending you a hug until I see you again. Hang in there, I lvoe you!

Stacey said...

What a sweet, sweet post... Not that I didn't already know it, but what a confirmation of the wonderful person and mommy you are. With you, my sister-in-law, a close friend in my ward, and a sister I visit teach all sharing the same struggles of dealing with a child on the autism spectrum, I am just constantly amazed with the love, patience and strength you all have.

Jensen Family said...

Liz, I think you guys are amazing. I'm sure I can not even imagine what it is like for you. We love Parker and he teaches us all so much. I'm am happy to help in anyways that I can.

Bill said...

I have not been able to bring myself to comment on this post, until now - Liz,Parker and kind friends are all subjects dear to my heart. But I do need to say how proud I am of Parker and his Mom. They battle thru so much on a daily basis. I want to echo all that's been said to this point and add my own public cheer for the two of them. They are amazing and so are all of you for the kind words and deeds you show to Liz, Parker and the rest of our family. Thank you!!!

Edwards Family said...

Liz I love you and your family! You are such a kind and beautiful soul.

Lee,Rebekah said...

Thanks for posting your feelings and showing all of us what it is like to be in your shoes. You are a wonderful mom and Parker is such a cute kid and so lucky to have you and Bill. You keep your head up and hopes high because you are surrounded by people who love you and your family.

Linda said...

Liz - I just got back to checking in on your blog and catching up. I too was crying as I read this post! I knew it was difficult with Parker, but I had no idea. . .you & Bill do everything so well,especially parenting! You are truly amazing - that is why you have been given such a special and beautiful spirit to raise! I was so impressed with how organized and "on top" of everything you are when I stayed with Emi & Parker the day you had Quinn. Please let me help you also - I'm family!! I love y'all SO much!!