Monday, February 16, 2009

The End... or rather, the beginning. Well, sort of.


I began this blog in the spring of 2008 and kept my thoughts there private for nearly a year before becoming a public blog sometime in 2009.  I have since deleted all previous posts beyond this point but have left this for you to read if you have come this far.  

And if you have, wow... my hat's off to you!  That's a lot of reading of some really bad photos and some crazy moments and tons of "I was too lazy to spell check it" posts.  If you stuck it out this far, then I bet we'd be fast friends, having been though all of that together.  Ha! 

Thank you for reading and if you want to stop in and leave a comment letting me know you were here, I promise I won't think you're a stalker. 

:)

 





52 comments:

  1. God gave you to JJ and we know you and his dear daddy will do everything in your power to help him grow into the man God intends him to be. Labels, schmabels. He's your kid, he's a child of God, he's amazing, and he'll have an amazing story to tell one day. I, for one, can't wait to read it.

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  2. So sorry to hear all the new diagnosis. Continuing to pray for you guys and I know that God will give you the grace needed as well as for JJ.

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  4. JJ is one of the most amazing children I have ever met. He is incredible, social, bright, and seriously...what child is more fun than JJ? None. JJ is strong, you are strong...you will both make it through all of this. I'm so thankful for him that he has such a proactive family who will love him and help guide him each step of the way. The Lord sure knew what he was doing there. As for me, I'm just praying that JJ will come back and team teach with me one day. :)

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  5. Sasha,
    I just found this post about JJ.
    Just wanted you to know that I am a special ed. teacher. (not that it helps you any, just wanted you to know) I will always be praying for you and your family. I KNOW that JJ must be a very amazing child and that you and Adrain must be very amazing parents!
    Glad we are blogging together!
    Sandy

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  6. I can just tell from your posts that JJ is such a special kid. Even when his weaknesses seem so loud. Skyler's meltdowns have certainly changed over the years - he doesn't really have any anymore - and all the years of going to my 'zone' and getting through his tantrums seem to have paid off. We have a lot of work to do together, he and I. We will still need lots of God's help. But he's such a great kid. I hope this helps to give you hope that the tantrums and fits won't be the same forever and JJ's great aspects with get 'louder' as the years go by. But certainly he has some great great things to outshine the rough parts that he will always struggle with. Just as my son Skyler does.

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  7. Took a moment to browse around your blog and so glad I did. You are an amazing mom as evidenced by this post re JJ. He is so blessed to have been entrusted to your care. Also, the scripture at the end, was just what I needed to see this morning. Thank you.

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  8. I knew i found you for a reason...I honestly just KNEW but I cant finish reading your post because I am just bawling...your boy, he is JUST like mine, really seriously JUST the way you describe him...I had to start homeschooling...I dont know where to start. Holy geez, I cant believe you understand, I havent written about him yet...hes got such a tender heart. do you have an email on here somewhere??im gonna go look.

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  9. You are a sweet sweet mom and JJ is blessed as well .

    d

    sits friend.

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  10. Hi! My name is Cat and I found you on SITs. I popped over to say Hi when I noticed your little link to this post. Having a child with special needs of my own, I had to check it out.

    My heart goes out to you and your family. Heaven knows it isn't easy having a child that isn't "normal." My son is speech/language impaired and it has been such a struggle for us. Everyday is hard. But everyday is a blessing.

    You will probably agree, but having a child with issues really puts things in perspective. Each milestone reached is a cause for celebration. My little Sammy, hard as he is, has really blessed my life and I wouldn't trade him for a million "normal" kids because he is pretty special.

    I love your blog btw, I have to read some more.

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  11. Just found your blog, via Humble Pie. Was reading your story on your precious little JJ. I think you are a wonderful person, and loving mom and you are doing everything you can, to make your little boy happy and comfortable. Pat yourself on the back. Keep it up!!! You are not alone!!
    My own JJ-----two and a half---has already his own issues. I know i shouldn't compare, but many of the symptoms you describe, sound like my own JJ! He was very colicky as an infant, came five weeks early, cries VERY easily for the littlest things, craves milk all the time, and is starting to bang his arms and head on things, and jumps, or "falls" onto things! So,needless to say, I am concerned. However, reading your blog has given me a little more confidence and makes me feel like I am not alone, either. So, thank you!

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  12. Sasha... I just decided to check out your blog because I have seen your comments on some of the blogs I follow. I am so glad I did. As I read this post about your son, it reminde me so much of my son and our situation. I just cried and cried as I read it. We have delt with sooo much and now he is almost 11 and will be in junior high next year and I am at a crossroads. I am just seeking God on what I should do. Should I homeschool or not? I have a list of reasonds why I think I shouldn't or couldn't, but am waiting on the Lord and I know he will direct my steps. Thank you for sharing your journey. I will be praying for you and yours.

    Take care,
    Adrienne

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  13. Oh, and I forgot to say the best part of reading your post about JJ was that at the end of it seeing the same scripture that God has given me about my son. That same "why" question would try to pop up in my mind and one day God gave me that same scripture to let me know that it was so His glory would be shown.

    Just wanted to share that.

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  14. What an honor to read your story. I stumbled on your blog (you must've crafted something cute!) but your story about your son just took my breath away. We don't have any of the struggles you share - but you said something I can totally relate to/struggle with too: "It isn't about me, it's about him." It is so hard not to view our children as a part of us, they certainly seem that way and they own our hearts. But that isn't right, and it is a disservice to them. They are their own person - created just as God intended. And He taught us how to love, and hopefully, will use us as a model of love. You are a model and an honest inspiration as you share your story and your life.

    Thanks for sharing.
    Tara

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  15. Sasha, thank you for sharing your story, it seems we all have one, doesn't it. The other day I met a lady who adopted three children from three different mothers, who were all addicted to drugs & left their children. She adopted these children and loved them and cared for them...all of them have their quarks (one worse then the rest) and I said to her, you are an amazing person to take these children in as your own and love them like no other...I truly believe God placed her in the position to be their mother, to love them and give them LIFE, as their real mothers left them to suffer. Sasha, God chose you and he is so proud of the job you are doing...even though your son may always stuggle JJ will always know one thing...that you and your husband love him always, you never let him suffer and you always care for him. Some people give up...and never get to feel the emotional bond...the love and the amazing nature of their children~ Thank you for sharing~ hugs and love~ Tara

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  16. My heart just broke reading this. Especially this: "asking why God would allow him to have been made so different". It's so hard to see a child suffering.
    You are an inspiration to me. Strong, resilient women who put their complete trust in God always inspire me.
    Big hugs to you, your Ade and your cute little lemons.
    Elle

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  17. Your story is full of love, hope and encouragement! My 9yo daughter has been a challenge since she was 2. By the Grace of God she's mine and we love her to pieces. Things are well now..but we have our "moments." We also have an 11 yo son and 5 yo daughter. SO many times I found myself asking "How am I going to handle one more day of this?" But....as you said...God gives you lemons-MAKE LEMONADE! I love your blog-I was a "lemonade maker" also coined "Hotdogger" God Bless you and your family!

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  18. OK, you may think I'm crazy but but have you seen a really, really good naturopath for any of these issues. I know that is a simplistic answer for a complex problem. I don't want to do an entire novel here (for a change) but I do want to say that food and environment sensitivities, hormone imbalances, vitamin-heavy metal-organic build-up can cause lots and lots of very, very strange problems with kids. I used to think naturopaths were voo-doo doctors but I can tell you, honestly, I have seen things that I would have never, ever though possible. If you are interested in having some dialogue about this please e-mail. You have my blog link.

    Some of the craving things you write about and the hyperactivity and emotional roller coaster remind me very much of one of my own children.

    I don't know ... we can talk about this if you like.

    Hugs and many blessings on this ongoing battle.

    My childs devastation was different but the pain of such things can be so unbearable at times.

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  19. It's funny how much I can relate to your feelings of inadequacy as a mom, of the pain of not being able to "kiss it and make it better", of the cry of "this is not what I had planned!" As my kids & I deal with the carnage of a divorce I didn't want, I find that the worst pain, by far, is the helplessness I feel at bringing some comfort to their shattered hearts.
    I also resonate so deeply with the love of God breaking through your heartbreak, giving you what you need when you need it, showing himself to be Enough.
    The pit is deep.
    But God is deeper still.

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  20. It is incredible what we can handle when we rest in God's strength! Your son has been fearfully and wonderfully made by his creator and He will give you all the grace you need every step of the way. I just said a prayer for you :)

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  21. Wow, what an amazing journey you have been on and will continue to be on with JJ. How wonderful that you are relying on His strength to get through this. Hang in there and know that you have a great cyber-support system out there :).

    Melanie
    www.tutubugblog.blogspot.com

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  22. We have faced some of the same challenges...the schools testing and not knowing,the meltdowns,the sensory issues,the social issues, the EARLY milestones (my daughter too was running at 9 months!)the huge vocabulary,the innocence,the unconditional love,and the incredible sense of protectiveness that we as their mothers feel.I would like to reccomend a book BRIDGING THE GAP.It really helped me to understand my childs n.v.l.d.(non verbal learning disorder) It is not a very well known diagnoses and is actually a fairly new one.If you ever want to talk please feel free to contact me.I do not have a blog and i normally do not post comments but your story with your son really hit home.Take care and God bless.

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  23. Wendy,

    I don't have any way to contact you, so I hope that you check back. Thank you so much for taking the time to comment. I certainly find myself connecting to mothers of children with all types of disorders after experiencing this.

    I have actually read parts of that book you recommended to me after JJ was originally diagnosed. It was really helpful too, as so many of these disorder symptoms overlap into other, similar types of disorders. I wish you many blessings as you travel a similar road with your precious child. I continue to struggle, though I seldom document it in my daily blog, and consistently come back to the fact that God is fully in control, and loves our children more than we do. If it weren't for my trust in that fact alone, I would have given up long ago.

    I pray for strength and encouragement for the many mommies who have taken the time to read this post.

    Blessings,
    Sasha

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  24. I'm a Behavioral Therapist and work with children with a range of unique abilities. Do not, for one second, think that this all happened due to bad parenting! What a horrible person to tell you that! They are ignorant and I get so angry when I hear that professionals are telling that to parents. It is absolutely not true.

    Your attitude and outlook are so positive it inspires me. Every child is different and it is just a matter of finding out what works best for each one to make them successful and happy each day. You sound so strong and proactive. Thanks for sharing

    Claire

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  25. As I was reading through your post I thought it sounded like SPD because my 4 year old had been diagnosed with a mild case of that when she was 3. She got help in OT where they brushed her skin and helped her grasping and now you can almost not tell that she has it..of course I can tell but to the average onlooker they would have no idea. Her social anxiety is still pretty high and we work with her but I commend you for all you do for JJ and that you are so supportive. It is hard when people just dont get it..for the child and for the parent. I am happy you are getting help.

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  26. I just love your story and how you see it through your eyes. I have a child with Diabetes and someone said to me at 15 months when he was diagnosed...Man, God must have thought you would be an amazing mom to give you a child with speical needs. He trusted you so much with this kid. That has stuck with me that I was trusted to raise this child. Welcome to the club you amazing mom.

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  27. Hey Sweetie I wanted a refresher on JJ's problems. Sooo good that you have this sidebar note out there to help other moms dealing with the same issues. Trust me there are several.

    Did you know I went to school for Occupational Therapy? So I am very familiar with all of his behavior's, especially his sensory issues.

    You are doing such a good job. Homeschooling as hard a decision as that was, is the best thing for him. No one knows your son like you. Kudos for being obedient and allowing God to use you in such a powerful way. Praying for you as you deal with this day in and day out. Love ya girlie.

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  28. Thank you for sharing this information. I know it will help many people in their parenting journey! "I need God to fill in my gaps" is something I pray He will do for me EVERY day...I don't have a child like JJ but with 12, I've experienced the angst of feeling like I'll never be enough, do enough, or have enough to go around!! Blessings to you and sweet JJ...

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  29. Can I just say thank you for being the woman God made you and for taking care of this blessing and asking for his guidance. Thank you for not giving up when it is hard. Thank you for sharing your story with me.

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  30. Hi Sasha! I can not imagine the struggles that you go through daily. I have no idea what you have looked into or tried to do to help JJ. I'm sure you have scoured ever corner of the world and you may already know about the things that popped into my mind after reading this post. But, I feel like I can't leave without suggesting them. I couldn't find an email address on your site so I'm leaving it here.

    The first thing was the eczema...I don't know if JJ still has problems with this but my daughter had eczema as a baby and come to find out she was milk and soy intolerant. Not the same thing as allergic. She tested negative for allergies but she definitely has an intolerence to it. I have heard of kids that have a milk and soy problem also having behavioral problems as well. I don't know much about this though.

    Another thing is a homeopathic medication call Calms Forte. It is made by Hylands...which is the same company that makes the teething tablets. It is completely homeopathic and non-habit forming and supposed to be safe for kids. It might be worth a try if JJ is still having problems with this.

    Also, have you looked into Chiropractic treatment? I know it sounds crazy but I have heard this exact story from someone else and they took their child to a chiropractor and he was a different kid almost from the beginning of treatment. The chiro he went to was in North Carolina...I don't know where you are but I'm sure this chiro would be happy to talk with you and suggest someone in your area. I used to go to him when I lived in NC and he has recommended chiros in the areas we have moved to since that treat the same way he does. His name is Aaron Prinkey and his website is http://www.ncwellnesscoach.com/testimonials.html.

    Again, I have no idea if you already know about this stuff or have tried it before but I had to say it just in case.

    If you would like to contact me my email address is trmejo@Yahoo.com.

    Many Blessings to you!!
    Megan

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  31. My oldest has some symptoms of Symptoms of Sensory Processing Disorder. Both of my girls are also Spirited. Have you read the book Raising Your Spirited Child?

    My oldest is 5, and it's rare for her to sleep through the night. It's 1am, and she's still up, that's not uncommon for her.

    We have not tried the sensory diet yet. We do homeschool, and I believe that is what is best for us. I think if we were to put her in school they would try to diagnose her with ADHD.

    Sounds like your son is special in so many ways. I think that children who have such spirit about them teach us so much about life, and living.

    Stay blessed! I know you both have challenging days.

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  32. This was incredibly well written and a pleasure to read. I work in a neuroscience lab that studies developmental disorders and I really appreciate getting to read first hand accounts of how a child struggling effects the parents and manifests in every day life. All the best.

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  33. My son has many of the same issues that you have described with your son. Jayden was just diagnosed with PDD-NOS, with the possibility of Aspergers as he gets older.
    I know how hard the day to day struggles can be and how it is even harder when others do not understand what you are going through.
    I'm so glad that I found your blog from SITS.

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  34. this post is so well written and expressed! its extremely touching. it is nice to see you taking the challenges so positively. i do believe that God chose you for this very challenging and yet very rewarding task of raising JJ. he is indeed a special child and i can't help but love him from what little i know about him.

    love your blog, love your header, lover your posts...dropping by from SITS. have a lovely day!

    persis.

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  35. Your story and way with words are so moving! God truly shines through your posts and bubbly outlook on life. What a blessing you are to your little guy! I love where you said that we have to let God fill in the gaps...so true...every single day! Thanks for being so bold to share your story in hopes to glorify God and reach others. I'm hooked to this lovely blog!
    -a fellow SITSta :)

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  36. God knows what he is doing- he found parents who care enough to find out what is and do what is the best for their child. Kudos to you and your family!!

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  37. Sasha-

    Ran across you blog while surfing around during my lunch break. I'm a chiropractor in IL, not sure where you are at, but I thought I would mention to you a visit to your local chiro. you can find one that specializes in pediatrics from this site http://icpa4kids.com/index.php
    If there is one thing I've learned in practice, it's that the power that made the body can heal the body. I've been blessed to see that in some of the children I've treated. One in particular is a boy with a severe case of autism. After he started being adjusted, he started to jabber more, and, though we can't understand most of what he says (yet), he's really opened up and responds to my questions, and the biggest blessing for his parents so far, he uses the toilet now. Another of the kids needed only one adjustment to cure the cough he'd had for 3 years. I know its scary if you've never been to a chiro, or if what we do has never properly been explained, or if you've had a past bad experience. With what I read on your blog, it seems that JJ's body and his mind are not always on the same page. That's where chiropractic care shines. If you can help the brain really be able to communicate with the rest of the body, amazing things happen.
    I hope this doesn't seem pushy....but it never hurts to try. If there is ever anything I may be able to help with, or questions I may be able to answer, don't hesitate to ask,abbieballard@gmail.com May God bless you and keep you!

    Dr. Abbie Ballard @ http://littletrailerbigpeople.blogspot.com/

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  38. Wow, what a generous post. Allowing us in like this. I admire your faith and perseverance. God is truly amazing and should we continue to trust and be faithful our rewards will be rich.

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  39. Thank you sooo....much for sharing this. I have been having mini, meltdowns to be honest with you for the past few months.I am a homeschool mom, who has two boys. My oldest has ADHD, and we just found out our youngest, who is three, has ASD. I'm truly thankful there is mamas out there, like you who are open. I know that our light, who is God, is there, helping and guiding us.You have such a beautiful blog. May God bless you and your family.

    legendswife

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  40. I have been 'stalking' your blog since I started blogging in Jan. =) I enjoying laughing at your wit, enjoying your projects and encouraged by your spirit! I walk a path very close to yours... I too have a little man with 'issues' to worry about... Sammy's issues are medical 'mysteries'... sometimes scary and heartbreaking for this mommy! I am blessed to be Sammy's mommy and grateful that even though life is hard at times... He is a precious perfect child of God given directly to me! Blessed!... Once I have figured out my writing style...and really settle into blogging... I hope to have a page about how I handled my little man's life as it was granted to me by God... just as you have posted so openly about your little man! As always... Thank you for blessing and encouraging those of us who stalk you!!
    Just Jenn ~ SeizingMyDay.com

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  41. I am so moved by your story... I saw you on Beth's LPM blog and I admire your patience and courage. After all we are clothed with Strength and Dignity! It especially touches my hearth, for I have a 5 month old and these thoughts are sometimes in my head. I had a rough pregnancy (still I am sure others had it worse) but sometimes I wonder if things like this will develop with my little gift from God and if I would ever have the courage to be able to deal with it. I cannot imagine how difficult it is for you and your husband. But, as I am sure you know, God does not give you anything that you cannot handle! Let me know if there is anything I can do to help (vent, talk, etc.)... much love and alligator hugs! Tori

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  42. I just came back to reread this and couldn't recall if I ever recommended Diane Craft to you. The Dysgraphia thing caught my eye as it's something I've heard her speak about at hs conferences. You can find her website thru hslda.org or just by googling her. She is a veteran hser, therapist and nutritionist so is extremely knowledgable about brain development, learning problems, etc. I hope you find her helpful.

    Alison

    Alison

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  43. I have a son who has CAPD (Central Auditory Processing Disorder) - it affects how he hears. He has perfect hearing but how he hears affects EVERYTHING. It's like dyslexia of your ears. One of his individual symptoms is the inability to hear tone, which affects how he interprets communication. Last year when we moved, we finally moved to a place where communication coaching (interpreting communication cues that are not verbal) was available. As aJR in H.S., he was not interested and passed on it. I wish I had had it available when he was in middle school. I think it would have solved many issues. CAPD is often mis-diagnosed as CAPD.

    However, the one thing I do know is that God knew what he would struggle with. God knew and God has a plan! That alone has carried me through many days. And, I figured, God gave my son to me knowing that I was just what he needed. That has helped me to not lose confidence as a mom. Keep those ideas in your heart as you continue forward in this journey!

    His spirit name is Faithful. Often, I wondered why God put that on my heart - because, well, he hasn't been that way to his family. However, God explained one day when he told me that one day my son would witness to others about how God remained faithful to him, never abandoning nor forsaking him!

    I pray blessings, strength and peace in your mom-journey!

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  44. Oh girl.

    I am so inspired by you. Your faithfulness, your perseverance, your POSITIVITY! Now, I know I don't *see* you in the dark times ... BUT - to post this in an amazingly transparent way without any trace of bitterness or cynicism...is TRULY inspiring.

    THAT is where your great faith is evident. It is real, it is tangible, it is TRUTH. I am so so SO blessed by this post, and your faithfulness in this journey with your precious boy.

    Thank you for this post, it fills me with His Truth and hope and love - and I am so blessed by it.

    Hugs & TGIF~
    T.

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  45. Thanks for sharing your story. My son sounds a lot like yours, brilliant but struggling with pragmatics and sensory issues. He has Asperger's.

    I pray that you are surrounded by the support your family needs and that your son soon realizes what a gift he is to his momma.
    Happy Mother's Day!

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