Thursday, August 5, 2010

Now There Are Two: Finding Out You Have More Then One 'Sensational' Kid

My precious baby boy, Xander.

This was my baby boy a few hours after he was born. It's funny but I knew, even then, that he needed me a bit more than my other children did, just like I did with Jaimie. But it was different with Xander...much more intense.  He cried continuously. So much so that the nurses politely came into my room in the middle of the night asking, "Did you bring a pacifier for him?" He calmed the moment I wrapped him up tightly in his hospital blankie and held him close to me--quite the opposite of what happened with Jaimie.

He never ate well, constantly throwing up after every feeding; not just the little spit ups either. We're talking the full projectile vomit. Even when we'd brought him home, he screamed in his crib. We let him sleep in our bed, which we'd done with all four of our babies. (Jaimie hated co-sleeping, feeling better in her own bed.) He needed to be rocked, rocked, rocked before he'd go to sleep. He couldn't stand being away from Mama. When he was around one-year old, he stole one of my sweatshirts, which he still uses as a blankie.

There are times when he's a happy, fun-loving boy. I wish I could hold onto ever to those times. Because for most of the day, my sweet beautiful little boy is crying, angry, upset and screaming. He hurts himself and others, he calls us names, he yells at us and it continues for hours. There seems to be no middle ground with him. He's either through the roof and extremely difficult to calm down or so low, we have to get right in his face, calling his name, as he lays on the floor running his cars in front of his face. I knew something was amiss. I knew his nervous system was in trauma but I also knew there were other things going on.

Such a sweetie!
As he's gotten older, his struggles seem to have grown with him. We noticed his speech wasn't progressing as well as his sisters' had. In fact, we couldn't understand him at all. And he can be very aggressive when he's angry. We thought that it was his speech causing his behavior; afterall, it can be very frustrating trying to communcate with people and they aren't understanding you. But he found other ways to communicate with us: pointing, gesturing, and making noises. At least we could get him what he wanted/needed without as much crying. The problem is that he hasn't gotten past that.

I knew that weight worked for him. And swinging seems to calm him. It wasn't enough, though. And when he turned 3 we knew we finally needed to get him some help. We needed help. During Jaimie's last round of OT, I discussed Xander's issues and how he and Jaimie fight like cats and dogs.

"It's like they're sensory polar opposites," I told her. "She avoids touch, he can't get enough of it; he seeks movement, she avoids most of it; and the list goes on. And he just doesn't understand that it drives Jaimie to violence when he stands close to her or touches her or pats her on the back or something."

There were several visits where Jaimie's OT and I had to talk about Jaimie's reactions to Xander and how we could help her work things out with him in a calmer, less aggressive way. They are so much alike, yet so different. What amazed me was that it was actually Jaimie who suggested Xander had SPD too. One afternoon while Xander was going through a seemingly endless overload meltdown, Jaimie turned to me, covering her ears, and said, "Mama? I think Xander has SPD too. He's mad because something hurt him."

A girl who can't even relate to other people on a social level most of the time picked up on that! Amazing.

So last month, we finally got Xander in for his assessments with Jaimie's OT. If nothing else, we could rule out SPD and figure out another path. Yes, it was scary for me to have to start from square one again but I couldn't just let him suffer any more. It wasn't fair to him or the rest of us. Xander was completely through the roof for the first assessment. He screamed, cried and refused to look at anyone. After about 1/2 an hour, he hid under his blankie. His assigned OT came in the room and squeezed his little arms and legs--just like I do at home--talking to him softly, trying to coax him into the sensory gym. He wouldn't budge. I was ushered out to fill out my part of the assessment and the OT still worked on connecting with Xander. Just when I thought we'd have to leave and try again, I saw her carrying Xander--still hiding under his blankie--into the sensory gym. I heard her tell him he was on the platform swing and that she was going to swing him. I heard him giggle. They'd dimmed the lights and made the room more...calm. For the remainder of the session (only about 20 minutes) he was like a different boy. He was responding, trying to follow instructions and doing what he was supposed to do.

The next week was a little better. No tantrum. No crying. No hiding. He went right in the gym with his OT and participated. I did the rest of my paperwork and waited. At the end, the OT came out and said, "Now you said to me last week that he spends most of his day how he did last time at the beginning. This time, he seemed so much happier. I'm just wondering what was different today?"

I couldn't give her a solid answer. "I think he was a bit more used to things. He thought his sisters were coming with him last time but he was alone. He'd had a very stressful day with his sister. He was tired. He didn't eat much for lunch..."

"...and today?" she said.

"He's still really tired and fought with his sisters but he had alot of time in our basement on the swing. We went for an hour-long walk and he was speedwalking ahead of us the entire time. He ate a bit more today. I guess he's just in the middle part of his cycle."

Xander's 2nd b-day party. DIEGO!!!
That's what I call what we deal with: cycles. It's almost an hourly thing. He starts of not too bad then gets more and more 'up' until we can't bring him back down. He runs around laughing inappropriately, bumping into us and knocking baby Sophie over, squeezing too hard, tackling us, and he won't stop coming at you no matter what you try doing to stop him. He won't look at you or seems to hear you then he crashes. One tiny thing will happen and he throws himself on the ground or gets down on his hands and knees, running his head around the floor like he's a vacuum cleaner. He screams at us, calling us names or calling us bad. And he screams, makes grunting noises and cries. That takes a long time to comfort him from too because he doesn't want us to hold him. Heavy lap cozies or weighted blankets work but not for long. Then when he finally stops crying, it starts all over again. And, of course, Jaimie feeds off of the 'up' part then I have 2 kids that I can't calm down. It's exhausting.

Yesterday I had a meeting with the OT and the clinic psychologist. I wasn't nervous because I already knew what the issue was. Or at least part of it. What I wasn't ready for was to hear how severe my little guy's issues really are. His scores were off the charts. In fact, he scored MUCH higher than Jaimie on every level except 'sedentary' (which is basically his ability to sit still or need to move. They need to do more testing with him in this area because he swings so widely from needing to move constantly to flopping on the ground almost comatose.). I burst into tears when I saw the results. I mean, you know, right? You know when something is wrong. I've already gone through all of this with Jaimie so my gut told me it was sensory. I just wasn't prepared to see how badly he was affected.

They told me that Xander is so severely affected in so many different areas (eating, sleeping, sensory, speech, cognitive, emotional, behavioral) it was difficult to determine what the base of his issus is and what was affecting what. He's so developmentally impaired that when he's melting down I need to be asking myself, "Is this from frustration with speech? Sensory issues? Not understanding the world around him? Or typical 3 1/2 year old behavior?

"You have a long road ahead of you with little Xander," the OT said. "He's going to need alot of help. I am going to help with the sensory stuff. We can figure out how to regulate him but he needs regulation in these other areas too."

The psychologist further explained that with all of the issues he has, we need to 'control for' his speech, the sensory, etc. then see the 'real' Xander when all other factors are held constant (or regulated). If we can see the 'real' Xander underneath of all of that and he's still reacting the way he is to the world around him then they'll have a better idea of what the next steps need to be. In other words, they can't assess him for Aspgergers or ASD or mood disorders (we're worried that bipolar is with us too) until they sift through the other issues.

I'm tearing up while writing this because I look at my little boy and I know who the 'real' Xander is. He looks at me with his hazel eyes, devious little smile and cute little cheeks and I know. He bear hugs me or rubs my cheeks between his palms, saying, "I love Mama!" and I know. He's my baby boy. Nothing will ever change that. A dear friend of mine reminded me that all of this therapy he needs won't change the core of who he is. It will give him the tools he needs to live in the world with us but he's still my Xander.

Postive things came from all of this though. Everything we'd gone through with Jaimie gave me the experience, knowledge and resources I need to get Xander what he needs. I'm stronger than I was then. And I will not sit back and wait for things to happen. It will happen. The other thing is that because of the level of the severity of Xander's issues, and the fact we have two severely affected children, we will finally get funding and access to programs. It saddens me a bit to know that we couldn't get all of these things for Jaimie years ago. We kept hearing, "I empathize but your daughter 'only has' sensory issues. We can't help you." Today, there is much more awareness for SPD and we have a psychologist who not only 'gets' SPD but fully supports it. We are in a good place. I'm sorry that Jaimie had to suffer so much before we got the help we needed but now I can help both of my children.

Please...if you're reading this...I know you are going through something similar. You are on your own journey. Maybe you're in an 'up' right now where things are going well. Or maybe you've hit a bump and are in distress. Wherever you are right now...please...keep moving forward. Last night I cried many tears wondering why we're going through this again. Why my kids have had to suffer so much before people listened to us? Questioning whether I'm strong enough to deal with both Jaimie and Xander's issues while caring for a daughter with health issues and a feisty toddler. But God obviously thinks I'm alot stronger than I believe I am. Today, I'm filled with hope. God gave me these gorgeous children because they needed a person who could love them, care for them and nurture them despite their high needs and I was entrusted to be the one to make sure those needs were met. I'm still not sure whether I deserve that honor but, damn it, I'm going to step up to the challenge. And I ask the same of you.

I love you, Xander.
Keep moving forward on your own journey. Never give up. Allow yourself to feel those emotions when you hit those bumps. And always trust your gut. We are all in this together and united we'll help these children be everything they're supposed to be.

Please feel free to share your own stories if you are a caregiver of more than one 'sensational' child. Let's help each other through this.

12 comments:

Just another Mom said...

Oh Chynna....there aren't enough words. Yes, we have two sensational children in our home, and like yours they are polar opposites. Joseph got diagnosed in the first grade, however our long journey with him has paved the way for his brother to get more immediate attention and help. Dash was diagnosed when he was 2 1/2 yrs old. Joseph was a seeker and quite advanced in speech, Dash an avoider and quite delayed in speech. 6 months of in home OT for him and all his delays began to vanish. Because of early intervention he did not qualify for services in preschool for delays, but did for adaptiave behaviors. Again, our struggles with Joseph paved the way to get help for Dash. Had I not had the extensive history with my district I don't think Dash would be in the developemental preschool program right now. I don't know if I have made a good name for myself or not, but I do get what my kids need one way or another. I am either respected or avoided, lol.. and I am okay with that, just so long as my boys are treated well and have what they need. My experiences have weakened me physically, but have made me stronger than ever emotionally. It has been such a strange mix of experiences of heartbreak, discoverey, and support from people I have never met in person that I feel closer to than anyone. I can relate to every word in this post, I so feel your pain and hope, because I am living it too. You have my total understanting, support, and love!

father of four said...

Hi Chynna, Thank you for sharing this - it was very moving. What a beautiful baby! Your photos reminded me of my two boys as babies - we have four "sensational" children (only one with special needs) and I heard every word you said. You do know who the real Xander is and don't ever let go of that! You will hold onto this knowledge of his true self, help him to realise it himself and make sure that others see his true nature as well. That's what it takes to be a Mum or Dad and he has a head-start - he has all of you. Cheers, fatheroffour

Chynna said...

Jen, as always, I truly love hearing from you and so appreciate your comments. It seems our histories with our babies is so similar. And I absolutely love you saying "...I am respected or avoided and I'm fine with that as long as my boys are treated well and get what they need." I have gone through all of that as well. I feel much stronger this time around with Xander because I already have the 'learning' part under my belt. Now I just have to adjust that to understand Xander's form of SPD and all of his other issues. I know I CAN do it, I just have to not lose myself in the process. Afterall, we can only help our kids if we are strong, healthy and rested too, right? (A lesson I keep having to remind myself of because we can get so caught up in helping our kids, we forget to help ourselves.)

Thanks for commenting, Jen. Talk to you soon!

Chynna

Chynna said...

Hi fatheroffour! I was so touched by your post I had to respond to you separately. =) I'm in a good place with being able to help Xander because of everything we've gone through with Jaimie. The one thing I worry about the most is being able to give ALL four of my kids what they need. With two kids with such high needs and two that are more 'typical', I need to be able to find the balance to 'Mum' each of them. I have to remember to take the Special Needs Mum hat off at certain times of day and just be 'Mum'--even with the high needs kids. That's so, so important. Underneath it all, they are still 'just kids' aside from the therapy, OT, iLS, assessments and everything else. They are 'JAIMIE' and 'XANDER' and I constantly need to make them see how many wonderful things they have inside of them ASIDE from the SPD part of them. And they are beautiful. =)

Thanks so much for posting, fatheroffour. I hope you'll come by again.

Warmly,

Chynna

father of four said...

... and just today my eldest daughter asked me (with tears in her eyes) not to spend all of my time with her brother as I left on another work trip for a few days. (sigh) So yes, we must always strive for that balance and not forget everyone else's needs ... and our own.

Chynna said...

Oh fatheroffour, that made me tear up. =( I hear that alot in our house too. Lately, even Jaimie has been telling me Xander is getting more of my time than she is. I sometimes never feel like I give ANY of them enough. But it's possible to give each of them that time. We NEED to. Even if the housework piles up a bit or the dishes don't get done, each kid deserves some of our time. THEN we need to take a bit for ourselves too and with our partner (if you have one).

It's all a balancing act. It can be difficult to get the footing at first but it IS possible.

(Give your sweet girl a HUGE hug. =) )

Talk to you again soon, I hope.

Chynna

Martianne said...

I only have a moment now as it is bedtime for my little man and he is not going down easy, so Mum computer time must end. I just wanted to say your post was beautiful - honest and inspirational.

I have far less on my plate than you do, but, I, too, feel doubt some days and your words "But God obviously thinks I'm alot stronger than I believe I am. Today, I'm filled with hope. God gave me these gorgeous children because they needed a person who could love them, care for them and nurture them despite their high needs and I was entrusted to be the one to make sure those needs were met. I'm still not sure whether I deserve that honor but, damn it, I'm going to step up to the challenge. And I ask the same of you" hit home! Thank you

Chynna said...

Martianne, I am so glad you stopped by. Thank you for your kind words. PLEASE come back again, yeah?

Peace and love,

Chynna xo

Patty O. said...

Wow, this is is so timely. This summer, I started to put some pieces together with regards to my daughter's often troubling behavior. My older son (7) has SPD and high functioning autism and all this time I clung to the fact that my daughter was "normal." But lately, I have been noticing behaviors that, though totally different from my son's issues, seem to nevertheless be sensory problems. So, here we go again. We have an eval set up for Sept.

I feel so similarly to you. I am overwhelmed and wondering how I will manage to add even more therapy to our already tight schedule. How will I give all three of my kids attention when 2 of them have these needs? how will I survive this?

Thanks for giving a message of hope. I needed that!

Chynna said...

Oh, Patty! That's exactly how I felt at first. I already knew that Xander had...something. Just like with Jaimie I knew shortly after he was born. But I hoped that it was just a speech issue and that he was just mimicking Jaimie. But his behavior got worse, his sensitivities got worse, his eating got worse...etc. and his speech wasn't getting better.

When I got the results a couple of weeks ago, it wasn't a surprise but the magnitude of his SPD and other issues was.

I feel alot better this week. I have his Sensory Diet planned out and I just have to find ways to get his and Jaimie's input as much as I can together (eg: going to the park, swimming, indoor playground, etc.) then find ways to meet the rest. Xander's needs are so much higher and he needs and Jaimie STILL isn't able to self-regulate...she needs alot of guidance. But I believe in my heart that things will work out.

I remember how overwhelmed I was in the beginning with Jaimie, even before I knew the name for what she was dealing with. And I was also dealing with Xander's issues before we knew everything. So...I know we'll be okay!

And so will you. Keep in touch and let me know how things are going for you, okay? And I'll do the same here. We're all in this together and we should reach out to one another. It feels good!

((HUGS))

Chynna

Anonymous said...

Thank you so much for sharing your struggles. I'm just starting to find out about SPD and a lot of things seem to match with some of the challenges we have been facing with our 2 boys. At the same time though, we discovered we were dealing with milk, egg, and pollen allergies as well. In case this helps one person out there, and especially as your little one struggles from birth as ours did, I want to suggest a rice milk and no milk protein trial. I haven't seen much written on this, but a Baby Center poll was showing up to 1/3 of parents say their children with SPD struggle with food allergies too. I had no idea allergies before that allergies can cause behavior reactions with no other symptoms.

Chynna said...

Thanks so much for sharing your tips. That is so important to be aware of. We also have allergies here that I noticed were influencing symptoms so it's great to have another parent make us aware.

<3

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