We always seem to have these times where we (by we I mean, he, I mean, Calvin) slide backwards and I don't really notice until there is one week that is utterly horrific. It's like a giant slap in the face that things are going terribly, terribly wrong.
This week has been one of those weeks...Cal's up all night. Irrational all day. temper tantrums. Screaming. Hurting himself. Obsessed with one thing all of the time. Over and over and over and over.
As you may remember Cal has been diagnosed with ADD and Apraxia of Speech. We also had not taken Autism off of the table.
So we went in yesterday to talk about yet another fun A-word: Asperger's.
Several questionaires and an evaluation by the doctor later and we were forced to have "the talk" as I always call that time.
Here's where we are at:
The doctor feels he's too young to be trapped under a diagnosis but she's 75-95% sure it's Asperger's. At this point only time will tell how far back he will regress, how mind numbingly frustrating this will all become. For now we are diagnosed as PDD-NOS, which is in the Autism Spectrum.
I'm in tears just writing this.
It is so frustrating as a parent watching your child's progress slide and there is nothing you can do. No rhyme or reason behind it. No clues as to how far this will go. No way to find out how they feel or what they are thinking. No way to know if they are happy. No way to tell if they love you. If they feel loved.
I don't know why a diagnosis affects me so much. Maybe it's the finality of it all. The "this is what he has and WILL have for the rest of his existence". Perhaps it's because my Mother-in-law has always intimated that there's nothing wrong with Cal, just that I lack any sort of parenting skills to deal with him. I guess in a sick, weird way I was hoping that woman was right. I was hoping the doctor would say "there is nothing wrong with this child."
But those aren't words I am going to hear. Ever. I don't know why I keep hoping. I guess it's that every present hope that we mother's have...whatever the brunt of the problem is, we want to take it on ourselves, not have it be upon our children.
Yesterday at the appointment the doctor recommended a Psychologist to try to help us figure out how to figure out Cal. We asked about a Family Counselor...to be honest this all is VERY trying on our marraige and family life: there is much too much fighting about how to deal with Cal.
Her answer was, "it will always be like this"...that alone made me want to curl into a ball and sob. You need a support system is what the Doctor's told me before...you're going to fall apart, YOUR MARRIAGE is going to fall apart at the seams if you don't have someone you can call for a break.
Yet therein lies another problem...there are no troops to call. My parents faithfully take the kids one evening a night which is heavenly! But they work and aren't available to come when I'm having one of those God-awful days or when Nick and I need to fight in ways other than whisper shouting at each other in the kitchen. And sadly our kids have been, for lack of a better word, overlooked by their other grandparent's since they now have other grandchildren. No friends, no family. No troops storming in to help. Goodness I wish my Aunt Jan lived closer. I bet she's bake a casserole. Or popcorn balls.
And so I sit here in the early morning hours after Nick goes to work. I read every self help book about Autism and Asperger's and ADD I can get my hands on. I wait for the storm we will inevitably have when Cal awakes. I wonder if I can make it through this day...I pray. Fervently I pray.
A couple of things I should say are this:
*I know that some of you may think I am over-reacting...that we haven't gotten an Actual diagnosis yet. But Nick and I are on the same page in believing, she's basically saying he has Asperger's...and we feel he has it too.
*I appologize if anything I have said is harsh...I may read this and realize that some of it isn't true. I'm not really in a state of mind right now to cover up harsh realities with sweet quips...it's my blog so you're getting my raw feelings right now.
*We wholehartedly know that things could be much, much worse. I am in no way taking this out of perspective or anything...I just feel people, no matter how severely their child struggles, all go through a mourning period of facing the fact that their child may never manifest themselves in all of those hopes and dreams you have when they are first born.
*We covet your prayers. For those of you who know me on Facebook, I honestly felt your prayers raining down on us yesterday while at the doctor. I felt more at peace than I usually do. Please keep those prayers coming! Pray for peace in our household and pray that we will have happy, healthy children...those are our goals overall.
Love you all...comment if you will :)
7 comments:
Love you girl, and i'm praying, praying, praying. I obviously don't have kids, and I can only imagine what you are going through right now. You are one of the strongest women I know. You and Nick are WONDERFUL parents. I again can only imagine how hard this will all be, but I KNOW in my heart that your family will strive and survive. -Amber-
You have my number, if you need troops to come in, I can be there!! I do not work that far from you!!! I'm off at 11am! Text or call! I understand how you feel, you know what we went through with my oldest. Please get a counselor, you and Nick have a WONDERFUL marriage and you CAN survive this but you do need someone to give you a break and play mediator! This helped my husband and I through the struggles of our oldest! ((((HUGS)))
Chrystal
A couple of things that have helped us, #1 find a natural suppliment regimen to get him on, kids on the spectrum have a hard time absorbing A,B,C,D,E also St Johns Wort, and fish oil, we even use melatonin at night to insure he gets a solid amount of sleep. #2 go gluten free. I know it seems hard and pricey but you can soak grains to break down the gluten and that uses regular grains. #3 NO processed foods or white sugar!! again hard to do bc everything has it and it means you spend lots of time in the kitchen, consider it home ec and have the kids help, I try to do all by preping 1 day a week. (I can give you recipes or links if you want) #4 exercise, in small bursts that work his muscles, up and down stairs, push ups ect. #5 do not expect too much from him or you!!! If he can only do 5 min of math or half way make his bed, so be it. just work with him to get better by telling him how it should be, it may take months, and then he might regress, some things might just be him, and never change and you need to explain we dont do that, but dont punish him for behavior he cant control! But dont let him get away with things he can control or knows better about, it is a very fine line and hard to walk. The spectrum SUCKS! I was hoping the same thing when we went for my sons app. please let me just be a crappy mom!! "You formed my inmost being; you knit me in my mothers womb. I praise you, so wonderfully you made me; wonderful are your works! My very self you knew; my bones not hidden from you, hen I was being made in secert, fashioned as in the depths of the earth. Your eyes foresaw my actions; in your book all are written down; my days are shaped, before one came to be." Psalms 139:13-16 May Gods Grace be with with you, with Him all things are possible!!! (ps, we did not find conseling to be as helpful as the diet and behavior modification is. But that is only our personal experinse with it)
I have been there & done that and have inspiring stories to tell. Stories to help you create new dreams for the future as you lay aside those you've held in your heart forever. There is a FUTURE, Lindsey! It is just different than anything you have imagined. You will have to fight for it. The victories will be MANY!
Go for family counseling if you feel you need it. What Cal needs is a Mommy & Daddy that love each other and model love before him. He may not be able to verbalize those feelings right now, BUT THEY ARE THERE.
I am tearful as I feel your pain and frustration. I would love to be a support for you in any way possible. Let's get together. Maybe whole family. You can see what adults w/ADD-AS-PDD look like. PLUS, Both Barney & I would love to help you walk this wild/weird path you're on.
Mostly, this will show you how strong you are! But even when you are not strong, you have so many people who are loving, praying and hoping you will tap us on the shoulder to say "I'm tagging out! Can you help me?"
Hello. I am a friend of Maxin who told me about your blog. This has been my first chance to get on here and read it. I agree with Jen about getting all the help you need. We have two boys and both boys are Autistic. Kyle is our oldest and was by far the worse of the two. Drs told us that he wouldnt have more than 50 words of speech, or be able to dress or feed himself. All he did, all day long, was scream. The only times he wasnt screaming was when he was eating or sleeping. And even then sleeping wasnt high on his list of things to do. My heart hurts with yours because I went through several years of grieving and not even realizing that was what was going on. BUT....God is faithful and has sent the right people at the right time to help us. It hasnt been easy but it has definitely been worth it. We had to teach Kyle everything: how to talk, how to touch, how to look someone in the eyes, how to eat properly, how to dress himself correctly, how to brush his teeth without going into meltdown mode, how to go into Walmart, with all the sensory overload experiences, and not drop to the floor screaming, how to go into a mall and be able to handle all the people, how to work with teachers, paras and speech therapists properly, how to go to the bathroom, etc., etc., etc., etc.
The worst thing you could think is that your alone and no one could possible understand what your day is like. Because like you I have certain family members who either think that they can parent better than I can or that there really isnt anything wrong with. Some even agree that while "something" might be amiss its not as bad as we say it is. Seriously?????
The one upside is that you will grow a backbone of steel that is 10 inches thick. After awhile you wont notice people staring at you in restaurants, grocery stores, and clothing shops.
But even though I said all these things that might, or might not, sound like I know what I'm talking about there is one thing I do know EXACTLY what I'm talking about.....and that is the grace and mercy of God. He has brought us the right people at the right times to help Greg and I through whatever difficult situation we were facing. He has been there when no one else, including the hubby who was at work, was there. He was there when I was curled into a fetal position screaming on the phone to my mother(who lives in Florida) because I thought I was going to lose my mind. God was there. I dont flippantly throw out terminology because I think it will make someone feel better. I'm telling you these things because that will be the ONLY thing that will bring healing to your family and help when you need it.
It sounds like you are surrounded by a great group of people that are willing to be your cheerleaders! I hope you can also count me as one of them. There is light at the end of this super-tight tunnel. There is healing for your son and your family. He can get better! This is the way I explain it sometimes. Some people deal with fear, others deal with lust, and some deal with depression. Kyle and Jonathan deal with Autism and severe ADHD and ADD. But that is not the sum of who they are and it does not solidify a hopeless future!
My name is Beverly Perry and you can find me on Maxins Facebook profile page. I would love to talk with you further. Thanks for letting me comment on here!
I can't thank you all enough for your kind words and support! And hello Beverly and thank you so much for reaching out to me! Being at home with Cal and Emma all day every day alone makes me feel very lonely...it's so nice to jump on here and be able to read your supportive comments. I'm not alone and I know God put you all in my path to show me that. Thanks again...love you all!
I realize that my comment is a little late. I read your post when you first posted it and I just can't stop thinking about how difficult this must be for you. I have been a little overwhelmed lately with work and home and all so I am just now actually writing what has been in my head. I want you to know that I have been thinking of you and your family. Simply my heart goes out to you ... I cannot imagine the ups and downs, the waiting, the not knowing. As a mother it is natural to only want the best for your child and to stop at nothing until you are satisfied with the results. Your children are so lucky to have such a devoted Mommy who is doing all that she can to make the best of the situation. Being a parent is one of the most amazing gifts you could ever receive. It is so unfortunate that some people don't understand or appreciate this gift. You, however, are not one of those people. I'm sure you never dreamed that you would be embarking upon this adventure in parenthood, nor did you (or anyone for that matter) want to take this specific journey. I have confidence that you will strive to get Cal what he needs. You and your family will work together to overcome this. Take it one day at a time. Slowly, but surely you will see the light at the end of the tunnel. Autism is such a difficult diagnosis for a few reasons, 1) not a lot of research has been done on it and 2) there are so many aspects of it, this is why it is now referred to as Autism Spectrum. I have a student in my class who I believe is on the spectrum. I have been talking with school officials all year trying to get some help for this student. It has been a lengthy process because of all the 'unknown'. Please take care of your family and of yourself.
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