Monday, August 5, 2013

Start again

I have been off blogging for a week.
My family was my focus.
After my last post I, and my family had a bit of a set back with my boy and his autism.
For the most part we have been very lucky in having the diagnosis very low and moderate as he is high functioning.  He on most days is a typical child.
You couldn't pick him out from a group and say there is something different about him.
But that all went away over the past week.
He had a tantrum of all tantrums and there was no pulling him out of it.
Once he did come back he was different.  He was touchy, sensitive in all new ways and just not happy.  This made me slide back into a depression. Realizing he was capable of sliding backwards even still after all the progress he has made.
We are desperately trying to find an in home ABA therapist that is able to say what might have brought on the tantrum and the change.
I was telling a friend last night, for most who have no idea what Autism is I tried to find a comparison for you.  When a tantrum hits it is like a new born baby screaming and crying all day long but add rage and hitting, biting and super strength.  Your house will be destroyed in a heartbeat.  And you have no idea why.  What he saw, or what he heard, or something you wore that day, maybe you moved his toy the wrong way, did he eat something that he wasn't supposed to? There is no calming him, there is no way out.  By the end you want to pull your own hair out and have a tantrum of your own.
I wish this disease on no one.  It is horrible and to every stay at home mom or dad that has to deal with it on a daily basis all alone, I cry for you.
It takes so much strength, and courage to keep going.
For a week we have been trying to make him come back to us, happy and the boy we knew.  Last night we had a break through and I can see him.  He is there and I am so close to having my boy back.
I know I am usually posting upbeat stories and how my boy is so happy and sweet.  I give hope to those struggling too that one day their child will come out of it.  But I have to write the truth and share the bad times too.
I wasn't prepared myself for the bad truth but it is before me and I must deal.
I just wish I had help in doing so.


NuminosityBeads said...

Oh Amy, My heart goes out to you and your family. I can't even imagine what you are going through. I wish you the strength you need to cope with the autism behaviors. Thanks so much for sharing your joys and struggles, I'm hoping that that helps you maintain your strength. Hugs and prayers xo

13 said...

My daughter is autistic and very sensitive to sounds and smells. She struggles socially and I've worked really hard with the support of her amazing teaching assistants to keep her in mainstream. But she had a melt down and it was due to it being the end of the school term where the kids are being loud and boisterous and the school structure is relaxed. And she found this too much, so I'm hoping with the rest and quiet of the school holidays she will relax and recuperate. I hope this may be the case with your little lad.

Anonymous said...

I wish for the life of me there was an answer.Our daughter had the sma eproblem with Gracie, she seemed to wake up in a bad mood, and when its a bad mood it means everything she touches she breaks, she wipes food all over herself the furninture, she climbs on the table again and again, she pushes anything she can find to unlock the patio doors, well it just goes on and on, then maybe two days .Our duaghter says sometimes its just not having the right tv show, or the wrong breakfast offered that will set her off.Then just as fast as it came, our sweet girl is back, lost in her own world but not agitated, I understand your pain.Is there any respite helpers for you?Never feel bad for telling us whats going on, the truth isn't always pretty or happy and you keep it real, take care my friend, I keep you in my thoughts,

afistfullofweeds* said...

Hi Amy, Trust me, you are not alone. My son was diagnosed when he was about 3 years old. Its been a constant battle with day cares, school system, (I had to get a lawyer and sue for services that he should have been getting anyway.) He absolutely hates being around a crowd of people, hates shopping, etc.....He is now 14 years old. I will not lie and tell you its a bunch better....cause, it really depends on the situation at the time. The tantrums almost always are triggered by something. It could be as small as him dropping a toy. (example). Most times you will not know what it is, until its too late to avoid it. I can't begin to tell you how many dirty looks and smirks I have got from ignorant people......even from my own family members....close family members. That HURTS my friend. They have no idea.....Never give up Amy. No one will Love your baby like you will. I will pray for Brooklyn and you as I do for my own son for the ultimate gift from God. A HEALING!! Love to you.......Rhonda

Gail Thayer said...

I'm so sorry to hear about your families bad week....:(.
Sounds so unpredictable and that would be very hard to deal with.
I hope you find a great therapist for Brooklyn that can give you some insight.

Hugs to you and yours!

Rhonda said...

My heart sings to read all the other mother's comments. My heart also prays for you and B for I know he is your world. I think about you two every single day.

Your inner strength is shining, my friend. A big hug to you!

Petite Michelle Louise said...

i can only imagine the strength...heart ache...challenges that this diagnosis brings you on a daily basis. so sorry that you are all having a very difficult week. i hope your sweet boy finds his way back to the sunshine real soon. you are wondefully-loving parents. never doubt it! thinking of you..praying for you.

Ricki Jill Treleaven said...

Oh, honey, I am so very sorry to read this. I truly hope you can find a fantastic therapist for B. Bless his heart, and bless yours, too!

I wonder if food allergies are causing problems for B. Have you asked his pediatrician?

Also, has anyone talked to you about Sensory Integration therapy? I know this would help him. We went through tantrums with Shelley. She screamed until she was 3 1/2 and was almost totally non-verbal. Most of the children in the group classes were on the spectrum. The kids love the therapy because it's almost all play therapy (swings, trampolines, etc.) and it helps so much!

Now, Shelley is the most laid-back of both our children, and she rarely has breakdowns. And when she does, it's usually over some mean girl issues at school! I'd probably have a meltdown, too!

Ricki Jill

Donna said...

We have spectrum disorders in our family is not an easy path, my heart goes out to you and sending you much strength and love to all of you. My step father is a special needs counselor and he often does meditation with autistic children. Maybe this is something to explore. There is so much power with meditation and the pathways of the brain.
Be well,

Diana Mieczan said...

No words can describe how emotional your post made me. I am so glad to hear that by last night you noticed an improvement and I hope that by today he is feeling even better. Please let me know if I can help in any way. Muah

Gail said...

Aw so sad for you and yours Amy must take incredible strength to cope ...I hope you get the help you need for you and your lovely boy ...thinking of you ...Gail x