There are days that go by without a care in the world. Without anything standing out to make that day seem "important or different." The day I heard Will's dx was not one of them.
Please understand a couple of things:
First - This is hard for me to write. My main goals for writing this blog is therapy for me and a way to relay this information to maybe, someday...help someone else. It breaks my heart to relive her words....
Secondly - In January of this year (2010) God told me we would find THE answer. He didn't say I'd like it. He didn't say it would fit nicely into a little box. He didn't give any clarity....just that it would be found. And, as weeks passed I realized that it may not be what I wanted but it would come crystal clear to me and my family. But, oh how I hoped it would be...ok.
Horribly sad story short...(oh, and she took the report back so I don't have all the fancy words in my head yet)
He has a mood disorder. (Yup)
He has PDD-NOS. Pervasive Developement Disorder Not Otherwise Specific. In short terms that is in the autism family, but not enough of the indicators to reach an autism diagnosis. So, it really means....something is really wrong...but don't know what. (Thanks a lot)
He had something else I cant' remember.
And, the one that physically is still hurting my heart....can't remember the real words for the diagnostic terms....
His IQ is 63.
What a blow to my heart and head.
A teacher is around 120.
Gardeners, Construction Workers, etc 90
70-79 - Borderline
Under 70 is Extremely Low
Will is 63
For those who know Will..you'll ask yourself...But, he's so smart? He builds things? He thinks of clever things? She said he creates an illusion of being smarter than he really is. He tries SO hard to please others by being "smart" and "well-behaved". Now, if you know Will he is NOT well-behaved.....so without his trying. Wheh!
His overall number is actually MR. mentally retarded... :( But, he scored in the 70's on some parts of the tests so he is labeled borderline. Of course, how LOW were his lows to average is 63? :(
He literally can't be better. Can't. Will never. It was like hearing my child is terminal...except he will still live. He'll live in his world that doesn't make sense....and our world doesn't make ANY sense to him.
She highly recommended that I stop homeschooling him. (major failure music play...) I started to tear up when she said this....Home needs to be only a "soft place to fall". School will always be hard. Learning will always be hard. Home needs to be a safe place.
So, I look at this little guy. And, I love him so much my heart hurts. He didn't deserve this blow. He has done nothing wrong. I know God didn't "do it to him". Our God is loving, merciful, precious God. He loves us. He loves Will.
But, I just don't know what the future holds. I don't know what tomorrow holds for us. I've already (many years ago) given up on college....on a normal life for Will. But, now... I know. I know. Who of you by worrying can add a single hour to his life? Matthew 6:27 I love how I write and God just POPS! into my head. :)
So, Dr. Britt told us she would be an advocate for us. She'll call Midway. She'll meet with them. He can learn...but at a much slower pace. By law, they HAVE to educate him. She said..we'll need to be the squeaky wheel. We'll need to keep on top of things. That is not my forte.
So..now I have no more mascara. But, I am listening to Selah sing....
Sweet Jesus
My Shepherd
You are my faithful friend
You hold me
You lead me
I'll follow till the end
And, once more I will say on that beautiful day
When your arms take me in
Sweet Jesus
My shepherd
You are my faithful friend.
Sweet...sweet Jesus.
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If I could just silently hug you and wipe a tear I would. My heart hurts because I know this breaks your heart. As a Mommy I understand just wanting a cure, or something to make that baby as perfect as we saw them when they were first placed in our arms. Life is cruel. Thank God that he is always good. I have no doubt that God has a plan for Will, and you. It will be OK. It really will. praying for you my friend!
ReplyDeleteShelly Oh my sweet Lord do we need to talk. I cannot do it on here. There are so many things that are so generalized and generic in your words. (that is not saying it was your words) However as I read your words first my heart hurt for so many personal reasons and then I became angry. I am not comfortable with others reading my story but I sure do have one that may just put your heart and mind at ease. But what I will say to you that I don't mind saying publicly is that God gave us these children for what ever reason. I know that if I had not gone through all of the ups and downs and heartaches and life threatening things with Brett, I would not be the person I am today....the mother I am today and the pastor I am today. More importantly I am so much better because of Brett. Was it easy. Heck no. But what you do have to remember is that test are just that test. Some kids are hands on kids and just do not do well on any type of test. Another thing is that those test were based on an average. But the question is ...an average of what? You need to read Dr. Levine's book. He tells us that we base everything on scales, assuming that everyone fits in those perimeters. But the truth of the matter is that we don't. For example I have Grave's disease and had the radiation to destroy it. Well my numbers fall into the 10 area which is still in the hyper mode meaning too high. But my body is non symptomatic. My doctor has now agreed that my 10 is someone else's 5. (or norm) If you want I can call you sometime. I have a phone line that does not charge for long distance. Just email me and let me know if you would like too. Shelley drop your shoulders and breath. This is just a bump in the road. Autism in any spectrum has adaptations that can be helpful. Sometimes PDD is just a branch of the spectrum that is part of a behavioral or mannerism....but not actually the spectrum itself. Will needs to find his niche and the numbers well they are just that...numbers. Albert Einstein was labeled as mildly retarded because of scores. Imagine that.
ReplyDeleteronnelou@comcast.net xoxox Ronnette
All I know is that God never gives us more than we can handle. You are one of the sweetest, most loving people I know (and how strange is it that we've never met in person) and I know that God gave you Will because he knew that you and Brad were the kind of parents that this sweet boy needed. Sending you lots of cyber hugs. Love, Vanessa
ReplyDeleteFirst of all I just want to tell you what an amazing mom you are! Next I want to tell you that homeschooling does not have to be out. I am struggling with a child that also has several mood disorders (bipolar, ptsd, and some others that I cannot remember) and a slightly higher IQ (79). School just is not an option for her for mainly behavior problems. She was under so much pressure both academically and socially that she was miserable. She is much happier now and even though we REALLY miss my income (I was a teacher) I know in my heart we are doing the right thing. The Lord will lead you in the direction he wants you to. I am praying for you!
ReplyDeleteShelley,
ReplyDeleteMy friend Debbie Cavitt sent me a link to your blog a few moments ago...I, too, have a son with an Autism Spectrum Disorder and I want to tell you that through this post, your pain is so real, so palpable and so familiar.
I have SO much I'd like to share with you when you're ready; to start, my son was diagnosed about 4 years ago. I've learned A LOT from other parents and a few amazing professionals along the way. I now write two blogs - one for the Dallas Morning News: http://momsblog.dallasnews.com/archives/leigh-attaway-wilcox/ and one for AutismSpot.com: http://www.autismspot.com/blogs/lawilcox about raising children with special needs.
The most important thing I want you to know is that your son CAN and WILL improve, so the "expert" who diagnosed him and gave you such a grave prognosis did you a tremendous disservice. Please know that there are many therapies, treatments, programs and interventions that will change your son's life, and as a result, your life (and your entire family's life) for the better. Parents who live with PDD-NOS and other ASDs everyday will be your best guides and may well become your most trusted friends and confidantes.
Please email Debbie so that she can share my personal email address; please feel free to contact me with questions, concerns or comments anytime. I'd also be glad to spend some time on the phone if you'd like, in the near future.
You will be in my thoughts and prayers in the coming weeks.
Warmest Regards,
~Leigh Attaway Wilcox
There is so much I could say here....but in short....you are not alone....he is not broken...my son is also PDD-NOS...we got our diagnosis earlier this year...I UNDERSTAND your grief...I do....but I say....keep homeschooling him...that soft place to fall is also his fortress to blossom! You hang in there and connect with other people who can help you learn to navigate this new path. May God Bless you and your family.
ReplyDeleteI recently got the PDD-NOS diagnosis for both of my twins. They are nearly 3. I also have a 15 1/2 y/o and an 18 y/o. I used to teach Special Education before the twins were born. As Leigh has said, Will CAN and WILL improve. I have watched my twins improve...not daily, but very slowly...however, improvement does come...there IS light at the end of the tunnel. As an educator I am not new to this, but as a mother this is very new and different. I am not very good at writing comments on people's blogs, but I just wanted you to know that you are not alone.
ReplyDeleteI just found your blog and want you to know that I am praying for you. Our daughter was diagnosed in April 2009 as low functioning, non-verbal and we left with almost no hope. The Lord has been faithful in providing everything that she (and we!) need - therapists to help, finances to pay, friends who have walked this road before us, encouragement on BAD days, precious moments and good days... He will walk this road with you, and I am sure that you will be surprised to find the blessings along the way. I know from your post that things seem very hopeless now, but Our God is bigger than any test scores and diganoses. He has a plan for you and your family, and you will see His amazing Hand at work in the life of your son.
ReplyDeleteAs far as homeschooling - I COMPLETELY disagree with the "professionals". I have been homeschooling my 12 year old since she was 4 (and also diagnosed with Aspergers, and Anxiety disordery), and plan to homeschool my youngest (classic autism) too. It has been such a blessing for them and for me!!
Please feel free to email if you want to talk, get support or have a prayer request. I am praying for you!
I just read your blog. I am an aunt to a 4-yr-old PDD-NOS, aka Autistic, beautiful little girl. She gets very frustrated at times, but I have one question: who decides what is normal and what is "not"? Will doesn't have to fit into our world, but we'd be blessed to be able to fit into his. That's what I have found out w/ my niece. To be a part of her world is to know unconditional love in such an amazing way! As parents and those who love these kids, our hearts break, we cry, we get mad...but I KNOW ultimately it will all be ok. I know you've probably heard this before, but I DO believe that God wouldn't have given Will to you if you weren't very special people who would love him and care for him. Somehow, we do what we have to do, and God holds our hand and our hearts, AND OUR TEARS, and takes us through it. Remember, God loves Will even more than you do. He will never leave Him nor forsake Him, nor you. Seek His face always, and also seek outside support. It's healing to talk to others who seem to understand what you're going through. I will remember you, Will and your family in my prayers. You all are in God's loving, protective arms. If you ever want to "chat", I'm on FB or you can email me at amkmom6089@aol.com. You will make it through this!! Oh, and IQ scores don't tell the whole story - only what the person is able to communicate on the test!!!
ReplyDeleteI'd love to hear more about Will in 2011!!!
Hugs and prayers from someone who truly cares!
Julie Kellenberger (OK)
I got your link from facebook, from the group "fun and function".
ReplyDeleteI am sorry you are going through such a tough time. I have a son who is autistic, though high end functional with aspbergers so I kinda know.
Whoever you saw for your son was a stupid quack. basically they want you to believe your son is "playacting" intelligence and want you to give up on him. I can see you won't which is good :)
The only limits our children have is the ones we put on them, let him go as far as he can.
You CAN cope, you CAN deal. Don't limit yourself before your race is even begun!! We moms are amazing, adaptive people, and you and your son deserve your very best.
Hugs,
Crystal Pegasus
Hey, just found your blog and wanted to send you some positive words and thoughts. It's hard to take the news (my daughter was diagnosed with Autism at 5 this August). It's SO hard to process. The IQ thing - it's just a number that indicates he's struggling with standardized methods of teaching. He learns very differently. There may be sensory integration issues preventing him from being able to focus. He may be a very visual learner which is seldom focused on in a classroom setting. The number just indicates he's not fitting into the system. Well, that's okay. Having this label - Autism - means the system is now going to HAVE TO adapt to his learning needs and style. That's ammunition in your pocket.
ReplyDeleteTake care of your heart and soul.
Victoria (also blogging my experience parenting a child on the Spectrum)
Was sent a link to your blog on fb through Fun and Function. I am a Texas mom of a darling 8 yr old boy with many medical problems. The one that kills us daily is his behavior and learning. He is currently going through the same tests your precious boy has done. We are now waiting for those painful heart crunching diagnoses. I'm glad I'm at least a pro at hearing medical jargon about problems nobody wants and nobody can cure. I don't ever want to go back to the place of starting fresh on the life altering journey that is special needs. I'm so glad to read that you have an incredible love with God! The Bible and God's Promises in the Bible are ALL that got me through for a VERY long time. I was only 21 when my son was first diagnosed with major problems so I didn't have the maturity and wisdom, but boy did it come FAST! ;) There's nothing like hearing a condemning sentence put on your child. But "we are more than conquerers"! Fall prostrate before the Lord and seek His heart for your son, He holds so much for our children than we can ever imagine or dream. The doctors have what they can see in tests and books, we have what God shows us from His heart! Stay strong and even though I'm "just a stranger" I'm also a Sister in Christ and am more than willing to pray with you and listen while you vent and help you with any questions you may have.
ReplyDelete- Kara cadsmom19@aol.com
Many of us that have written on here know your pain. I have two boys on the spectrum and a daughter with ADHD. My middle son taught me such a valuable lesson this year. He was "labeled" possible MR , PDD-NOS, speech impaired and mood disorder. I spent the next couple years working with him. trying to teach him. He received OT and speech and was in a special needs class with some typical peers. I had come to the conclusion that he is who he is and that he will never be a Dr. or Lawyer. I felt like there was no way to reach him in his world. He can talk, play and laugh like other children, but he is so different in many ways. He started first grade this year. I feared this for him. He had had such a horrible year in kindergarten that I was sure this was going to be even worse. @ three weeks in we were outside playing and he was riding his bike around in a circle. Around and around he went..... chanting 5, 10, 15, 20, 25, 30 and counted to 50. I was filled with so much joy I wanted to rip him off the bike and just squeeze him so tight. MY BOY WAS COUNTING! A few weeks later he was telling time... faster then his older sister. We had to move him from the special needs class for math into the reg. class room. Don't ever give up. We are so very lucky to live in a community that has such wonderful services for my boys. (and my daughter)
ReplyDeleteEveryday is a new adventure for us. Some days are good and some.....well not so good. I love being able to see the world in a different way with all of my children, even small advancements are cause for huge celebrations. I have shed so many tears some sad but many happy.
Stay strong! I am thinking of you and your family and wishing you the best of luck in your new adventure with your family.
Jessica
Shelly, if there is anything in life I have learned from my 7 year old daughter with Asperger's syndrome, it is that the world can be seen in many different ways.I will give you this example: When she was four and we were waiting at the Neurologist office my daughter kept saying "water, water everywhere". My mom and I figured she was just stimming and we let it go. She staring out the window got louder "water, water everywhere". I looked all around outside and saw no water. A little bit of time went by and she kept saying the phrase over and over. Soon I leaned back from the window and noticed it, a small drop of water sitting on the window, smaller then a dime. To her that was water everywhere... to me, well I barely noticed it at all. They see the world different, and I have come to learn that is sometimes a blessing. She has come a long way since her diagnosis (they are even thinking of changing it, since she is doing so much better). Socially awkward, unusually loud at times, flaps her hands, and doesn't have any fear, but I would face those things any day, since her smiles, hugs/kisses, and "I love you Mom"s make everything all better. I am blessed to have a child with needs that are special. Besides, She may have Autism, but I won't let the Autism have her. Good luck and God Bless you and yours. See the world through Will's eyes, you may be amazed at what you find.
ReplyDeleteHEAVEN'S VERY SPECIAL CHILD
ReplyDeleteA meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“His progress may be very slow
“Accomplishment he may not show.
“And he'll require extra care
“From the folks he meets down there.
“He may not run or laugh or play
“His thoughts may seem quite far away
“So many times he will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where he's sent.
“We want his life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”
I just read your blog and I say "don't listen to the "professionals" listen to YOUR heart because that is where God speaks !! I have MANY rare disabling neurological conditions, POTS (postural Orthostatic Tachycardia syndrome) and also have Aspergers, Anxiety, depression OCD etc. etc...the last psychologist who does testing for Social security disability labled me "below average intellegence" Now..I have not used spell check on any of this and I totally am making sense in my reply which is appropriate !! Plus when I was born the Dr's told my parents I was either mentally retarded or had cerebral palsey or both and to put me in an institution!! Well here I am Married and raising two boys I have a part time job right now but was an at home mom for 12 years!!...I also went to college....if MY parents had believed the professionals...where would I be right now???
ReplyDeleteAnd if I had believed the Neurosurgeon after I had brain surgery that I needed surgery on a tumor on my spine or I would be parylized in 5 years...well it has been 11 years and I'm still walking and talking!! God is who I listen to...He is the great physician !! I put my trust in Him....yes I listen to the "professsionals" and sometimes God uses other people like Dr's...but I Always listen to God first !!
I have two sons with neurological disorders,POTS, one has Aspergers and one has Tourettes (with autistic traits) and both have Anxiety, depression and OCD... I homeschooled them for 3 years..it was the best thing I ever did!! If I could have continued doing so I would have!! "Can't" is not in our dictionary...I should know I ripped it out myself as an example to my kids one day!!
I just want to encourage you to listen to your heart because that is God talking to you and He knows best!! God Bless you and your family....trust your heart !!
I felt your pain so keenly on reading this blog post, remembering hearing our own diagnosis. I just want to share with you something amazing... about a non-verbal autistic girl whom everyone wrote off as having no mental abilities whatsoever. This is HER blog. She can't speak, but she can type!
ReplyDeletehttp://carlysvoice.com/
We shared your post on our Facebook page and there are more comments over there - hang in there - there is a huge group of people pulling for you and your son :)
ReplyDeletehttp://www.facebook.com/FunandFunctionFans
Hello,
ReplyDeleteA friend of mine told me about your blog and about this entry.
Give yourself permission to cry and grieve for a few days, after that, jump on finding alternative or integrative treatments that can help your son.
Do not waste any time. There is so much help out there that you are not going to believe it.
I was you 3 years ago. My son was diagnosed with severe autism on Thanksgiving 2007. We have come a long way, we still have a way to go, but he is so much better than 3 years ago!
His improvement began when we decided to stop listening to the doctors and began listening to our instinct.
We found generationrescue.org, ageofautism.com, TACA.org,
Boy! There was -and is- so much great things that we can do for our kids!
I went to the National Autism Association conference in Florida this past November and one of the presentations had a family that received a diagnosis very similar to yours last year. Then the mom went to the NAA conference to see if she could learn how to help her child. She fainted in the middle of the conference because how overwhelmed she was. Overwhelmed with hope!
No doctor told her that there are treatments for our kids, until she learned it in that conference. The website has a video of the before and after of her son's treatments so far.
There is HOPE Shelley!
Pray but keep paddling to the shore...
Love and Gratitude,
Erika-
Oh Shelley, I am crying as I read this. Please remember that a number can never, ever fully describe a person. And an IQ of someone on the spectrum is especially difficult to calculate with precision, because their test taking, social, emotional, adaptability skills are all compromised. I hope that this doesn't seem final to you, but that it seems like a challenge.
ReplyDeletehttp://www.associatedcontent.com/article/782709/what_your_iq_score_really_means.html?cat=4
Come on Willie Pie, we know that you are in there AND that God, as always always always, has a wonderful, marvelous plan for YOU, that included this very special, golden Mama of yours.