They’re walking around the bed
On their head
Clippety cloppety
Arrayed in braid
Pink elephants on parade
“Pink Elephants On Parade,” from Dumbo
Since Nik was born, this has always been a very difficult time of year for me. I know that it should be filled with joy and hope, faith and miracles, and all that sort of stuff. But for me, try as I might to let it go, it still carries the essence of anxiety. The glimmers of impending catastrophe that gnaw through my veneer of calm, cool collectedness.
We knew just before Thanksgiving that there was something “not quite right” with my pregnancy. I spent the two nights before Thanksgiving at the hospital getting steroid shots and being monitored for hours before they would let me go home. My sister’s in-laws —who always welcomed me with open arms to every family gathering since my own family was 3000 miles away —pampered me and waited on me hand and foot that year. Nik was born via emergency C section the following Tuesday afternoon following a scary non-stress test (you gotta love the oxymoron name of that one, huh?!). My husband was somewhere under the San Francisco Bay —on his way to a conference in the same town where I sat alone and terrified in a hospital labor and delivery ward waiting to find out whether our child would make it long enough to be delivered.
Nik was in rough shape with no amniotic fluid to cushion him, the umbilical cord was wrapped a couple of times around his tiny fragile neck, and he was in a breech presentation. Try as they might, the OB and perinatologist couldn’t get Nik to respond to any stimuli. His body was shutting down and his heartbeat was irregular. Time was slipping away and attempting to take my child with it.
Niksdad made it with some few minutes to spare. Nik followed soon after.
I don’t’ remember much of the delivery, except the feeling of my insides being stuffed back in before they stitched me up. Niksdad had left my side to be with Nik. He was the only one of us who saw our son’s face unencumbered by breathing apparatus for weeks. Niksdad’s strongest memory of the moments after the delivery is of touching Nik’s hand and feeling Nik’s miniature grip around the tip of his index finger. “I’m here, Daddy. Don’t go away.”
Yet here we are four years later with our strapping boy. He has so many challenges and he fights like a hero every single day. I know I should be reveling in that spirit. And most days I do but, for some reason, these days approaching Nik’s birthday are always a roller coaster of emotions for me —and for Niksdad though he doesn’t show it quite as obviously as I do. There never seems to be an end in sight, a soft place to land to catch our collective breath.
I am sure some of this feels more intense this year because of the episodic pain that Nik has been having and our anxiety about finding a cause —and putting an end to Nik’s pain. Then, too, there is the fear and uncertainty of what lies ahead for Nik in terms of his overall development. We refuse to accept that Nik will not progress beyond where he is now in terms of his ability to communicate his wants and needs. With each passing day I see Nik become so much more engaged in his environment, so much more interested in socializing with familiar people like his grandparents and his therapists. Yet we also see so many times where Nik is simply not present at all; he has retreated into a place where we cannot reach him. There seems to be no middle ground, no place where we can see a continuum of progress unfolding.
We feel lost as to what to do for Nik. We pulled him out of school because we knew it was too overwhelming for him. Yet he needs something more than I am able to give him by myself. There is such a dearth of resources in our state unless your child is in the school system. It feels so damnably unfair that I have to put my child in a situation that I know is not good for him in order to gain access to certain services. And it breaks my heart that our financial situation is what it is right now and that we are not in a position to be able to pour dollars into additional therapy for Nik; he responds so well when he gets it.
Maybe that is the emotional parallel that I am feeling right now —the uncertainty, the fear of whether my child will be alright, and the worry that I am not up to the task. It definitely feels the same as it did four years ago; that’s a feeling I haven’t had for a very, very long time. I know that I cannot see into the future and I’m not certain I really would want to know anyway. But I seem to have lost my sense of being grounded recently and I don’t know what to do to get it back.
I need guidance, practical guidance, to find resources I can use to help my child. Things that I can do right here, right now —at home —that aren’t going to cost me an arm and a leg. Things that will give Nik some good sensory input and help him regulate himself enough to stay present more than spurts and moments in a day so he can learn the things he needs to learn. To communicate when he’s had enough and needs a break, when he’s hungry, when he’s bored and wants my company —and so much more.
Oh dear you certainly have been through the mill, there and back again.
I know it can be tough trying to do everything yourself at home. If I were in your position I think I’d contact the speech path and occupational therapist who know him best for some ideas that would be most closely tailored to his individual needs.
I know myself just how hard it is to keep them engaged and growing.
Wishing you lots of energy, coz you’re gonna need it girl.
Best wishes
I feel your grief over not knowing what to do. For what its worth, I’ll pray for peace for you (and will continue prayers of healing for Nik). As well, I will pray that you have an absolutely amazing holiday season this year, to help negate all of the intrepid feelings that haunt you every year.
HUGS.
I can’t pretend to imagine what you went through at his birth. You do have a beautiful boy and he knows how much you love him and are doing the best you can for him. I’ll pray for clarity and peace for you. Lots of hugs.
Same here, Niksmom. Anyone who reads your story will carry it with her for the rest of her life, and will think of you and little Nik and Niksdad along the way. Prayers for peace and answers. I wish I were equipped to provide some. K.
Oh sweetie, of course you feel like this. How could you not? And while you don’t think you are coping very well, you are in fact, coping beautifully. It’s okay to wallow a bit, to feel sad, to remember.
I wish I could do more for you than simply say I’m here, to listen anytime. You are doing such an amazing job for Nik. Don’t ever lose sight of that.
Sending a hug.
I am one for advice giving, but I have none that is useful for you. Just hugs, and thoughts, and prayers.
A counselor told me once that when you are put under a great amount of stress, your body reacts physiologically the same way every anniversary. I don’t know if that’s true exactly, but I do know when I find myself in a big funk and thinking in certain ways, that there’s usually a past traumatizing event in there. But as the cycles repeat, each time I process a little more, learn a little more, heal a little more.
I guess I do have some advice. Process the pain, feel it. Don’t burry it. But don’t let it burry you either. Go through and read some of your more recent ‘happy’ posts. You will see that there has been more growth, and love, and progress than you remember. And everyone needs time to retreat, to disappear, to be within themselves…even kids. I don’t know your little boy, but I imagine the bigger risks he takes to socialize and do other things that aren’t easy, the more equal amounts of time he’s going to need to retreat, reorganize, relax recoup. That’s the space you can provide at home that he wasn’t getting at school.
I can relate to so much of what you’ve written here. I think Ange is absolutely right on, both about the biological/psychological response we have to anniversaries, and about the fact that the only way to deal with pain is to go through it.
As for practical guidance, I read something on Ann Bauer’s website a couple of years ago that helped me tremendously at the time – and that I still think about often. I just went to find it, and it’s still there. You can read more of her words here, but I’ve cut and pasted the part that really stayed with me:
Some very wise person once said to me, “It doesn’t matter what you do to help your child, just keep doing it.” Through the years, we read poetry to our son. We played music and danced with him, served him ice cream for dinner, and took him to sacred mountaintop spots. We used behavioral therapies, gave him vitamins, eliminated dyes and preservatives from his food, hooked him up to biofeedback machines, and got him involved in chess. He’s had tutors, occupational therapists, kinesthetic work, and chiropractic. Did any of it help? Yes. . .no. . .I have no idea. He’s who he is supposed to be: stalwart and sweet, ethical, logical, trustworthy and good. He is an extraordinary math student, a natural at foreign language, and an audiophile.
I wish I could remember who said those words to me so many years ago. But it was during a time when I felt as if I were moving through fog – worrying, never sleeping, high on adrenaline and fear. I have no idea now who it was, male or female, parent or teacher. But maybe it doesn’t matter. I say it to you now but make no claim over the advice. It doesn’t matter what you do, just keep doing it. Go forward, love your child without reason. You are doing exactly the right thing.
two things:
you ask,
We feel lost as to what to do for Nik.
My answer is much the same as above: love him. love him. Love him. Everything else will follow.
and….
something that I did one time (I need to scrapbook it, maybe writing you will inspire me) is that I wrote down all that I had learned from Noah. We have such amazing children, and we learn so much. Try writing what you have learned from his existence – and I bet you it’ll be a long list.
*And it’ll be a good list.*
I read this post earlier and started crying so I had to come back. I knew there would be fabulous comments and advice, and I was right!
Your story, what you’ve been through, the progress Nik has made, and the struggles you have now, are so overwhelming. I hope the comments above are helpful. I think you are doing an outstanding job and that you have to just keep keeping on.
Continuing to send hugs and positive energy!
Oh dear. I’m with Lori at Spinning Yellow. It took me a while to get through this post- not out of sadness or pity, but of the tremors of familiarity I think we all feel, especially around milestones or holidays.
I LOVE what MOM NOS quoted about doing what you can for your child. I’m stealing it. You, my dearest, you are doing as much as you can, and you are doing it so well. Keep asking. Keep getting through it. And above all, keep believing in your boy – and yourself as a mighty, mighty mother.
I too wish I had some inspiring words to offer you. All I can say is that I hope you find the resources you need to continue the amazing job you are doing. Contrary to what you may be feeling, you have already proven that you are indeed up to the task.
Oh, sweetheart! Hang in there! It sounds like you’re doing a ton of great stuff for your boy, but just cause you asked for it, I’ll tell you some of the real concrete things I would recommend. You may have already been doing some of these things, but here goes: I think (for what it’s worth) that what’s very helpful for many kids with sensory sensitivies is to get consistent and exposure to a range of natural environments. Often those settings offer the kinds of visual/sound /motor experiences that are targeted in therapy. You might try getting into routines, daily and weekly, of going into and exploring public places. You might start by going in for brief periods during off hours for a few weeks, then change your schedule slightly to go when more people are there (I’m thinking of the post office, the grocery store, the park, and even other kinds of retail places like plant nursuries(sp?), shoe stores, etc). A lot of kids are really responsive to a place they can go JUMP, so if you can work some kind of jumping into your routine, that could be beneficial.
There may be some specifically child-oriented things you could look into as well. What does your public library offer? Any preschool story hours or puppet shows? Are you near a good university with an education program-there may be lab programs for their students, especially if there’s an SLP or OT training program. Have you looked into Head Start? Nik may be eligible because of his disability, 10% of Headstart slots are supposed to be reserved for kids with disabilities, and your local agency may be willing to work with you if your income doesn’t make you automatically eligible. Sometimes they need to fill those seats. Have you tried some networking with other homeschool families? Something that could cost some money, (but is really worth it) but I would recommend for the communication piece, would be participation in a Hanen program. Hanen is an intensive but short term speech therapy that really works by training parents, you can look into it by Googling Hanen Centre (based in Canada). They have a specialized program for families with kids on the spectrum as well. If you can’t swing one of the actual program, they have some excellent books including “It Takes Two to Talk”.
One thing I also want to mention, is that you’ve been through a lot, and as you sort through all the things that Nik needs, please remember that you also need some care. An important member of any family is the Good Babysitter, so if you don’t have any real respite care for Nik, then you need to find some or develop some, and then use it. Go out for a little while, have some wine, see a funny movie, and let yourself feel lucky and happy, even though you’re worried and anxious, because you’ve got a great kid .
Thank you so much for sharing about Nik’s first days in the world.
I reached a point (Charlie was 5) when I realized I could not teach him any more, and knew that school was the right thing for him. But that was Charlie’s situation—-
Are there any provisions for teachers or therapists to come to your house now to teach Nik, now that he is being schooled at home? If the school cannot provide an appropriate education at school, they have to provide it at home—I know, easier said than done!
Thinking of all of you.
Have you looked into alternative therapies? You may or may not believe in them but they can help you feel a bit more positive? Like Crystal heeling, colour therapy, Reiki etc. There is a weatlh of info on the internet.
Lately I’ve had to remind myself that it’s ok to be sad, angry, or just plain down for a while. None of us want to fall into a pit of despair but we can’t be cheery all the time.
Is there no part-time schooling alternative available to you? I hope you get the help that you need. You’re all doing such a fantastic job! I love looking at Nik’s smile.
I feel your frustration and exhasution in this post. Hugs! It is so hard when we are restricted by our state as far as the help we can get our child. We too pulled Maizie out of school due to her inability to cope there. I know your situation is much more difficult. Prayers and more hugs coming your way.
Wow, such an outpouring of support; thank you seems inadequate but…Thank You!
I’ve responded to some comments via email. Mom-NOS, thanks for what you wrote and the link.
Today is a better day (see latest post). Guess it just goes up and down and some times of year are harder than others.
SpeechGrrl, those are wonderful suggestions. I do take Nik out when I run errands but I don’t ever just take him to those places for HIM. I think maybe I can find more “field trips” we can go on and make then adventures for him instead of chores for me. Thanks for a new perspective.
In my state (DE),home schooling is legally classified as “non-public” which means I get ZERO ACCESS to anything offered under IDEA unless I put Nik back in school. It’s a crappy Catch-22 because if I DO put him back in school then we lose access to the outside therapies b/c Medicaid then says “Uh, sorry, it’s school’s responsibility now.” Then we are back fighting for “appropriate” which school says is medical not educational. Meanwhile, Nik suffers from being “warehoused” with minimal services and continual sensory overload. Until he HAS to be in school, we’re keeping him out. I am giong to start looking into some of the homeschooling groups in my state to see what other types of supports might be out there.
There’s a site called NATHHAN which is for homeschoolers of kids with special needs. And too, I love the Woodbine House books, all of them in the Down syndrome series. I think many of the ideas would be good for Nik too…I particularly like the Gross Motor Skills book, the one for Fine Motor, and the one for teaching reading. Each of them have very specific things you can do at home, and they don’t cost much money. Most of the books have things you can photocopy to make your own worksheets, etc.
If any of these resources sound good, email me. And I can send you more, too (but I don’t want to overwhelm you. I think the main thing has already been said…you are already doing everything right. You’re doing terrific! Love is the most important part of it all)
oh my, i’m feeling this with you. i echo what everyone has already said. you are doing so much for nik, every day, and you have since he came into this world. you are loving him, loving him, loving him, advocating for him, playing teaching guiding entertaining, BEING present with him, giving the incredibly powerful gift of your SEEING him and believing in him. that’s so much of how and why he’s where he is right now. that plus his fiercely beautiful spirit.
i believe in the power of going through the hard feelings, speaking honestly about them, letting them wash over you, being where you are in order to let it all move you to a new place. it’s okay to feel the sadness, the grief, the worry sometimes, the longing, the hurt, the ache. it’s not the whole story by any means. and there are gifts and lessons in it. the anniversary will come and then pass and you will be there still, strong and passionate, listening to your music, mothering that rambunctious boy of yours.
as to practical suggestions, keep looking for help–a student, high school girl, someone from the church. the Son-Rise program advocates setting up a program and recruiting volunteers. maybe something like that? there are wonderful people out there who would love to be part of nik’s team from washing dishes and folding laundry to brainstorming everyday OT things you can do at home. maybe a Floortime therapist in training? who could volunteer as part of their training?
i’m sending my xxx to you, sweetie.
I just wanted to let you know I am thinking of you everyday and praying for you and your family. I have rough days myself! And my son has very few challenges compared to your precious little guy. I thought of Nik on Thanksgiving and how much he enjoyed that turkey leg in the video.
Hi Niksmom. I was away from blog reading for a couple of days, but it’s heartbreaking to read this. It is so overwhelming to think of the future of any child and what it may or may not bring; it is doubly overwhelming when there are so many question marks. I wish I had answers or advice, but mostly I just have caring thoughts to send you and your family.
Hey there, sorry it’s taken me so long to get to commenting, it seems like everytime I have a minute I have a two year old crawling on my lap pounding on the keys.
I know how you feel, oh I know how you feel. We are coming up on the one year anniversary of when Rhett was overdosed, and now we have all sorts of tests coming up at the same hospital that almost took him from us.
I know that I should be so thankful that he is still here, and I know that I should also be thankful that we have an amazing children’s hospital in our state, but wow those feelings of being udderly scared to step foot in there because the memories are there, just like it is yesterday.
I have a hard time walking past the chair that I sat in when I called my mom to tell her what had happened. Then when I am there and a code is called, ugh, my stomach just falls, and I want to cry. It’s so hard.
Some days wallowing in our own sorrows for a bit is to get up and face the world the next day. At least it is for me anyways.
Just know that whatever you do for Nik is the very best thing for him. You are his mommy and you know him better than anyone.
Hugs and as always prayers to you.
Love, Pam and Rhett