41 Comments

    • Katie

      MY KID TOO!!! I came across your website, completely searching for something else and saw the part about special needs, clicked it out of curiosity, and what I read here… I feel like I could have written this. My 4.5 year old is the sweetest little boy you could ever want to meet, but in class, he is a “space cadet”, it’s like he isn’t even there. He’s in another world most of the time, occasionally still eats his hair, still in diapers (pooping only), people tell me he’s just a normal boy and he’ll grow out of it… but my husband and I KNOW he isn’t normal! In his class at school, with other kids his age you can just see his behavior compared to theirs. He is pulled out of class at least once a day for something. My family says “maybe you don’t discipline him consistently enough?”. We are more consistent than most other parents I’ve ever seen, because if we weren’t, it would be MUCH worse. I know he isn’t autistic but what on earth is this?! We finally (last week) got a diagnosis of neurocognitive processing disorder for receptive language, non-spectrum. I’m learning a lot. Thanks for writing your story!! I’m looking forward to reading more!

      • Katie, I’m so glad you found some hope here. Tomorrow our boy graduates from inpatient therapy and he has made SO much progress in the last six months. I hope you will take some time to read more of his story and be encouraged by it!

  1. Leeann

    What an excellent post. Thanks so much for sharing your (and Ezra’s) story. I love how honest you are- you really tell it like it is. I’ve been reading your blog for quite a while and I really enjoy it.

  2. Bonnie DeZelar

    Aprille, what you said about people not understanding or even having a clue….it’s sooooo true!! No one can really know what it’s like unless they have a special needs child or one that seems special needs, but you just can’t get the diagnoses! Trust your mama heart and gut! You know him better than anyone and the mama bear suit will continue to be used over time, but that’s ok, it gets easier to put on and there are a lot of us out here with the same suit! 🙂

  3. Aprille, ‘Ezra’s Story’ is beautiful and legitimate. My heart aches for you as you walk through this process of teaching and loving your son, because I can certainly relate. I’m so glad that Ezra is in a school, where they do behavioral therapy. Behavioral therapy has been the best answer for Hope. But, for only 6 months? I want more for you and Ezra. You are in my prayers.

  4. stacy

    We finally got a diagnosis for out nine-year-old today: copper toxicity primarily along with blood sugar control problems due to nutritional deficiencies. She’s been a difficult child since birth and the last five years have seen her behavior and emotional stability plummet. I know the road ahead will still be long and hard as we work to correct these problems. I can def relate to being in ‘no man’s land’ with no diagnosis although there were definite emotional and behavioral problems. It also gives me a feeling of vindication for every time my parenting methods were questioned, belittled and looked on as being un-Biblical, for every time my child was thought to be a manipulating, selfish brat with horrible parents. Today I finally have answers. I’m overjoyed that you and your family are getting answers and help as well.

  5. I am so thankful that you are getting some answers, Aprille! Continuing in prayer for you, because I know it will continue to be a struggle. Thank you for being faithful to share your story!!!

  6. Raising a special needs kiddo is….SO LONELY. I know that sounds funny to some people. I think for me I feel so alone in my feelings. And sad and heartbroken. I know there is hope. I have plenty…trust me. But I will be watching Cooper with his peers and he will do something so different than the other kids. And it’s just lonely. Hugs mama.

  7. Aprille, thank you for sharing your (and Ezra’s) story. I am a pediatric occupational therapist and there are SOOO many parents in your shoes in a similar journey trying to get their children the services they need. I am sure there will be many parents who read your story and instantly have a connection and know “they are not alone.” I know it is extremely frustrating when you meet physicians and “specialists” who won’t listen or don’t see your concerns in the short 20 minutes or hour they see your child. Ezra is very blessed to have such a persistent and loving mother who didn’t take “no” as an answer. I hope Ezra’s new school will be a positive experience and provide the services he needs. Wishing your family the very best!

    • Nichole, thank you so much for commenting. I’ve heard wonders about OT and am hoping to get OT services for Ezra (he should be evaluated this week). So far, Ezra’s school has already done wonders for him and I feel SO blessed that we’ve been able to make things work out like this so far. The advocating isn’t over by any means, but for now, we are getting some help (and amazing help at that) at least.

  8. […] And I just spilled it all out. His story, the difficulties – not just his birth story but all of the issues that we have had since then. And she just nodded along and then shared with me about her grown children – one in […]

  9. Nutan

    Hi ,

    Well , i hope this will help you understand a child. I myself observing the behaviour of parents towards their child since childhood.My parents are best friend to me since childhood and I share everything with them. They are my best friend because they treated me with affection, respect , care. They made me feel important, they gave me freedom to make my own decision (they corrected it if I am wrong by making it understand politely,respectfully ) . They asked my advice and suggestion which made me feel important.they never imposed anything on me. They never yelled at me.
    like for any person , for child it’s very important he should be treated very well , respectfully always.

    Yelling,slap, not talking politely and respectfully to your child always, not making him understand with reasons politely, not giving him time to play with , talk with them and to impose thing rather than make him understand and let child himself accept it , not giving love, comparing with other, not giving importance. Extremely sad but abusing of a child.All these things changes normal behaviour child to angry, short tempered,frustrated,tensed , sad , quiet child

    Saying sorry after hurting doesn’t soothe a child. For a child hurting means you don’t love , respect and care for him. Child takes out his frustration on others because he is not happy infect he is angry from inside because of hurt and pain he received so far from parents or from outside world. Most important thing to know that he is not abused by someone, I know it’s very painful to think of it but you have to make sure .

    To win your child’s heart and trust . you have to talk to him always politely, never yell no matter what’s the situation. Try to talk to him, take suggestion and advice from him . make him your best friend . try to connect with him emotionally, play with him , don’t be bossy around him and don’t impose anything on him. Cook his favourite food, give him surprise gift.in short you have to be very sweet, funny, charming and friendly person to him always . Give punishment in talking in normal manner like you will not get this gift because you did this which is wrong (explain it why too always)

    From birth to being an adult and mature , a child is very sensitive. he learns everything from observing parents and outside world.

    This process needs lots of patience but this is the right way to raise a child. A Childs behaviour develops accordingly he gets treatment from his parents mainly and others since birth.

    Nutan

    • It’s very naive to believe that good, loving parenting can prevent or alter changes in brain chemistry. The “bad behavior” of special needs children can be no more fixed by love and connection than can diabetes or poor eyesight. With all due respect, you really don’t understand what you are talking about.

  10. Nutan

    Hi,

    Sorry , But you didn’t understand. You are giving therapy to your chid that’s good. Therapist are doing their job. But what as a parent you could give to your child ? Positive approach , listening to him, connecting to him. In a nutshell a loving and caring nature.
    I hope now you can understand my point, dear.
    Nutan

  11. Thank you for your vulnerability. It is very brave to share the details of your life, both good and bad. I am sure you are helping many other moms because they see that they are not alone in their struggle.

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