May 11, 2015

Wherein I Face the Reality of a Special Needs Child

I've been struggling with this post for a few weeks. I think I'm finally ready to finish and publish it. It's only the first article of many as my family starts this journey.

For awhile now, I've avoided saying it. If you don't say it, it's not true, right? The chance that everything will turn around and change still hangs in the ether. As soon as the words are out, it's like a big boulder comes crashing down in the doorway, making it final. Blocking the escape from the truth. At this point, I can't hide from the truth any more. I need to face the reality.

M2 is a special needs child.

It's nothing to be ashamed of at all, yet it is still difficult to admit. As her mom, I don't want her to have to go through this struggle. I've had to fight through so many things in my life (that's a whole other story), I don't want her to have to as well. I also feel guilty saying it, because I know there are so many kids -- and their parents -- who suffer and struggle even more. Even so, it's the truth that she is special needs.

I'm not calling her special needs for her severe speech delay (at 2.5, she's at a 15-month level and hasn't improved at all since starting therapy in Novemeber). Maybe that qualifies, maybe not. I don't know. It's much more than that.

For the past few months, her behavior has gotten out of hand. Really, that's putting it mildly. She's a ticking time bomb. You never know when or if she's going to go off or even WHY she will. Forget trying to put the pieces back together once she does. You're on damage control at that point. When she's good, she's really good, more well-behaved than a toddler usually is. But when she's having trouble, she's like a mini screaming, destroying, tornado taking all out in her wake. There are also some behaviors that are downright dangerous. I'll go into more details in another post, this one is just meant to be an intro.

At first, we thought it was because of the new baby that M2 had gone from a sweet, normal, pretty well behaved kid to being very difficult. Everything spiralled out of control quickly, with no warning.Getting used to B would make it all go away, right? Wrong. She loves B. Absolutely ADORES him. She's not having issues with having a new baby in the house.

Her speech therapist started noticing the behavior and seemed relieved when I brought it up myself about two months ago. We got her evaluated with an early intervention team who determined that she has sensory processing disorder, known as SPD. There may be more, but we need to see more specialists to determine that.

M2 now gets occupational therapy, but so far nothing is working. It tends to be that things don't work at all, or work once and not again. She has a mix of hypo- and hyper-sensitivity, both seeking and avoiding stimulation depending on many factors. There are no patterns or triggers that we've figured out so far. One time, she may try to avoid something -- like loud noises -- another she may run toward it. The fact that she is SO smart makes things more difficult as well.

One of the reasons (beyond hoping it'd go away) I haven't talked about M2's issues and being special needs, other than speech, is because there is so much stigma and misunderstanding around special needs still. Many barriers and walls need to be broken down still in our society. People need to be educated and need to learn to be more accepting of those who go against the grain of what is "normal." I'm hoping sharing our story helps with this.

Another reason for the silence is that most people just don't seem to get it. So many seem to think it's just normal toddler behavior because they aren't around her all the time to see it or don't understand what is or isn't normal. It's not just a two year old being a two year old. Yes, she was fine when you saw her -- that was a good day. What you didn't see was the hell we faced for the two weeks after that.

Others just don't know what to say, or say they went through it with their kids at this age. No, it's not like that. This isn't normal behavior. I would LOVE to just be going through what you did. Some say that maybe I just don't get how a toddler should behave or can't handle it. Um, EXCUSE ME? Obviously, from your statement, YOU don't know how a toddler should behave and trust me, you wouldn't handle it any better than I am.

Even parents of kids who are special needs don't always get it and question me endlessly, challenging me on what we've been told by the pros, seeming to think they know more about the professionals about diagnosis and her issues. Um, no, you don't. Or, they think that people use the label of special needs just to be "cool" or something. You should know, having a special needs kid isn't cool or fun. It's a struggle every day. I've even had some tell me M2 can't possibly have SPD, it has to be something else because her symptoms aren't the same as their kid's. Uh, hello, every kid is different and M2 isn't the norm of being a seeker OR an avoider. She is both.

Don't get me wrong, we've gotten lots of support as well. I have a wonderful group of fellow stay-at-home moms (my mama tribe) who have given me so much advice and support. They are amazing ladies. Some are dealing with similar themselves so know what it's like. Even those that haven't/aren't going through it offer words of comfort and do their best to help how they can. Family members and other friends have reached out as well. Each does what they can to listen and try to make it easier.

Getting M2 the help she needs and getting us the support we need to help her learn to cope is going to be a long, confusing, difficult road. Just in the past month or so since finding out about the SPD, I've been overwhelmed and have learned there's so much more to it, and to getting her help, than I ever thought. It shouldn't be this difficult or take so dang long to get your child help, nor should you go broke to do so. The system needs an overhaul.

I have so much more I could say. Over time, I will. By sharing our journey, I'm hoping that someone else will feel they're not alone in their struggle. If you're a mom of a special needs kid, I would love to hear your story/advice/suggestions. If you're new to this special needs world like I am, maybe we can help each other through it.


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23 comments:

  1. Sounds VERY similar to what we went through with our youngest son. Hugs.

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  2. I know the frustrations of dealing with the issues of having a special needs child like a lack of support, having to wait for therapy, all the evaluations/testing, etc. It was rough and very depressing for me in the beginning for me when I found out my son was special needs. It did take a while for him to warm to therapy and things were definitely worse before they got better. Hang in there. I'm glad you have a great group of moms offering you support and advice from their experiences!

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  3. Oh I'm so sorry that you are having to face this. But please don't get discouraged by others' comments. No one knows your daughter like you do and you will know how to deal with this situation best. Sometimes people are just trying to be helpful but they really don't understand the situation and end up making you feel worse :-(

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  4. My heart goes out to you both, the whole family, actually. This is such a difficult situation. Blessings as you go through the diagnostic process and learn to live with this as a family.

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  5. I am so sorry to hear you are going through this, everything involving our children is so stressful and confusing... you are really brave for sharing your story and I hope you find something that works for your sweet girl.

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  6. I didn't know too much about SPDs. It's awesome that you have a supportive group of friends. It must be hard when so many people don't know about SPDs.

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  7. You are pretty awesome! Thanks for sharing!

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  8. Your beginning sounds similar to what I went through with my middle child.. she was a preemie so she had services already in place. But it was her physical therapist who suggested that she get evaluated by a developmental pediatrician. And I didn't want to, at first, but I knew it would be best for her.. Still, wasn't an easy pill to swallow.

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  9. Your courage is amazing. Sharing this journey will not only help you, but also countless others! I, too, am the mom of a kid with SPD. Two kids with SPD, actually, but the second one's symptoms are much less severe. It isn't easy, but "unload" the naysayers and build a dream team of supporters...doctors, therapists, family, friends, neighbors...anyone who doesn't judge or blame you is key to have around. My first SPD son - now 8 years old - was diagnosed at 5, but I knew way before that something wasn't right. It's a long journey, but you WILL find the therapies that work for you and your child. Trust your gut and love your child. Good luck!

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  10. I completely understand. My child has SPD as well. He's both a seeker and avoider. I can't get him to try things that might help him. It seems as if he is getting worse. It's been almost 1 year since the diagnosis. We've finally found an OT in our area that will take him as a patient. Hoping it provides some help and relief.

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  11. So happy that you shared this with us. You are stronger than you know and a great mom.

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  12. Thank you for sharing your story and struggles. It is so hard to open up like this... especially when it comes to our kids. Praying you all get the support needed!

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  13. It's good that you got your story shared so other moms feeling how you feel can benefit from your words and take some sort of comfort in knowing someone else out there feels the way they do.

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  14. Elizabeth O.5/12/2015 6:55 AM

    You are an amazing mom. I'm sorry that you have to go through all these, but you are a strong mom and you have amazing friends who support you.

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  15. We are having a similar issue with our oldest son. More education and awareness is needed for parents as well as caregivers of children with special needs as these children do need more attention and understanding.

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  16. I am sorry. You sound like an amazing mom. Who cares what people say and think, keep doing what you do, putting your child 1st above anything.

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  17. Thanks for sharing. I know how you feel. My oldest daughter is 9, almost 10 and has ADD. She also has sensory issues. It can be really exhausting at times, but know you're not alone! God doesn't give us more than we can handle. There is a reason why we are their mommy. I'm sure it is for them to teach us patience and understanding as well. :)

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  18. Thank you for being so transparent.

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  19. I have been working with kids with special needs for over 20 years now. It does get better, I promise! There will be so many moments of joy and accomplishments in your future. When it gets difficult, and I know that it does, take a deep breath and realize that you are not alone!

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  20. The way to stop the stigma about special needs is to talk about it. You have taken the step. Now you need support and understanding. I wish you the best in your search to hellp your child.

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  21. You are amazing. For you to share your family's story takes a lot of courage. I'm glad that you have such a great group of moms for support. Thank you for sharing your story.

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  22. You are the best for her! My prayers are with you and this is so inspiring and love every bit of it! Thanks

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  23. I can totally relate to you. We've been on this journey for about 6 yrs now. It's still a struggle because there are still new things popping up, new things we're learning, and things I have to learn to accept will be slow to change. I can understand why this must've been a difficult post to write and publish. I wrote a blog for about a year, detailing my journey, but I kept it anonymous because I found it too difficult to open up about some things before people that know me and my child. The writing was a good time of reflection though because it was a really a challenging season in my life. I've published a few posts on my current blog about having a special needs child to reach out to other moms, going through it. Most of the time, you just don't want to feel alone. You want to hear someone say, "Yes, I totally know what you're going through" ... that even though people may commend you for being a good mom to your kid, you know the truth that some days, it just sucks. But, you get back up and try again because when you look at your baby, you know it's all worth it.

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Thanks for taking the time to leave a comment. As a busy mom, I'm not always able to respond to each one, though I read and appreciate them all.