I’ve told our story to, what feels like, 4 million people…doctors, nurses, therapists, nutritionists, family, nurses, co-workers, bosses, friends, babysitters, insurance companies, human resource representatives, insurance agents, and one time to some random women in the grocery store line that may have involved tears and another teary moment in an elevator to another parent (thank you random person for telling me that I am validated in my freaking out moment).
Oliver has and always will be, just O., or the Monster, or my baby, or Oliver. I’ve spent the last 2 1/2 years explaining away his behavior. “He’s just quirky”, I’d say. “He’s just smarter than other kiddos”, “That just his personality”, “He has a big imagination”…. but then came our breaking point… and a wake-up call from my husband….
O isn’t “just quirky”…
Following a moment of complete breakdown in the cracker aisle at a grocery store on our monthly, family grocery trip D looked at me, hand on my elbow, as both O and I are sobbing and said “We need to see a doctor. This is not normal and not healthy”. I agreed.
“He’s not just quirky”.
We made an appointment with our pediatrician and our life has never been the same since. We hadn’t been in the office for 5 minutes before our Doc suggested Asperger’s and sent us to a neurologist immediately. I appreciate the support from our docs but within 2 weeks we went from a normal child to 3 therapists, a ped, a neuro, and a marriage that consists of discussing how to handle our child. I’ve been married to D for 7 months and been with him for 3 1/2 years and in the past 12 months we have done nothing besides handle our child. I watch O sometimes and want to scream at doc when I can finally talk to a live person and not a voicemail or an appointment 3-4 months away. I want to scream, what can I do NOW. Right now.”
I’ve ordered book on Sensory Perceptive Disorder and Asperge’rs. I’ve been calm. I’ve tried discipline. I’ve tried physically restraining him (holding him in my arms). I’ve tried singing (I’ll Stand By You). I’ve tried talking to him about blue (his favorite color), I’ve tried organizing his toys with him, and being a “hero”.
This Mom is tired, and frustrated, and feeling guilty for not being the perfect Mommy. I lose my temper, I lash out at my husband when I can’t hear myself think, my job and co-workers have more than been exposed to tears and and distraction. I’ve asked about a million doctors/nurses/ therapists for help and the reply I got yesterday was “you’ve made him a Momma’s boy with weak emotions and you should be harder on him”.
I’ve wanted a sibling for O. for a long time but I am beginning to see that there is a reason that hasn’t happened and never will. My role is to fight against the world for O. It is hard to explain to someone how much time is spent making his voice known and heard and his rights uphold. WITHOUT DUMPING HIM FULL OF MEDS!
Other Moms have said that the first year is the hardest but all I can think is that I am not the Mommy to do this. I am failing. I am lost. I love my Monster but I have absolutely no clue what I am doing. I am juggling and I am scared that all the balls will fall from my grasp at any second.
Comments
Jode
oh my goodness, what a raw emotional post…my heart goes out to you and i feel for you so much! Unfortunately we have only just started out on a similar journey so i can’t offer any words of knowledge but i do offer cyber hugs and the clarity that you are not alone in these thoughts. I truly hope you get the support you deserve soon…and don’t be too hard on yourself, you are being the best mum you can just by being there and being aware and seeking help for your beloved ‘O’. Wish you much luck on your journey xx
Marita
Oh hun. Big hugs. It is so hard the first few months.
You are not alone, there are many of us on this journey, lean on us and let this wonderful community lend you some strength to get thru.
joyce
I would start with trying to get an OT who is specialised in SPD and go from there. I am so thankful for the ones we have had in my childs life. And this journey you are just beginning, you can do and will do for you child. But to start you will start learning and when you start seeing result, oh what a day that is. You will get there, and you will have hard days, but at the end you have an amazing child who may be different but is exceptional.
Mandy
I’m not following this same journey, but any mother finding her feet on a unique journey breaks my heart. I remember when my daughter was ill with bowel problems and I felt similiar, talking about her experiences, trying to justify her situation, making it ok. Good luck, you sound like a good mum with perspective, the rest will be a learning curve, but there are some wonderful people out there more than willing to support you and your child. Let them.
Annaleis Topham
My tears that I cant help after reading your post are for you and your child and how life can be hard. I hope that you get the best support in the world and that your journey is a positive successful one. My own journey with my son who has PDD-NOS is up and down and reading your raw emotion in this post really moved me. Thanks so much for sharing and showing us we can support each other!
Heather Finnegan
BIG GIANT CYBER hugs! You are NOT alone. It is hard, it is very hard, but you were picked to be Oliver’s mom for a reason. You have the specific qualities he needs to make him successful. Now you won’t be perfect, none of us are. We are all doing the best we can and most of us blow it now and again…check out my blog and the post The dinner meltdown, mine! from a few days ago. Just keep researching, and reading. Take time for yourself and your husband. Both of you need to relieve each other-you could go for a run (saw that in your profile) as I know it’s freeing for me and helps to clear my mind, and you need to find someone you trust who can watch your son so you and your husband can go out together (or if grandparents are willing/able-drop O off there and come back home). Respite is as necessary as buying groceries. Which I might suggest you don’t take him with for until a little while. I am NOT suggesting you never take him out again, rather until you get a handle on what his sensory needs are and have ways of coping with them, relieving him from the overload might be helpful to all. Also check into ABA therapy. Might help with getting and handle on undesirable behaviors. Again, big hugs!!!!! Take time to cry and let all of it out. It’s NEVER easy to hear something is wrong with your child. It hurts! Some days it’s a physical pain down deep in my chest, but my son is great, at 6 (almost 7) life is much more manageable!
Jennie
Hugs. I have been there too. You are doing the right thing. You will be able to find ways to cope..for all of you.
And Doctors and helping people…are human too- they don’t see the whole picture. I was told kids do not have anxiety. I have a masters in social work. I have worked with kids with anxiety…Don’t give up on him. You and his Dad know him the best…you spend the most time with him. Your son does not have to live being frustrated.
How old is he? If he is school agreed- get the school involved as soon as you can.
I agree on the OT. Both my kids go and it is a life saver–
( you have gotten great suggestions on the site).
I think social stories are great. You can make your own. If he has Asperger’s he learns differently how to understand emotions. Showing him these things before he goes into situations will help a lot- if you need help let me know. It is like making a personal simple comic strip.
This also works well for kids that do not have this going on. Check at the library too. Also some hospitals have a resource center…full of things.
My son connected well with the school social worker: she told me about two books to start:
(at the time- they thought- anxiety and sensory- no anxiety disorder now- ADD, sensory and a physical delay..some times anxious feelings).
1. A “5″ Could Make Me Lose Control! An activity-based method for evaluating and supporting highly anxious students ( This book and activity got me to understand what was upsetting him)
2. When My Worries Get Too Big! A Relaxation Book for Children Who Live with Anxiety
I FOUND THIS BOOK- WHICH i LOVED FOR HIM….
Making Sense of Your Senses: A Workbook for Children with Sensory Processing Disorder (Instant Help Book for Parents & Kids
I also got Indigo Dreams…there is books and music. (Mine loves music)
Get a binder and folder and a notebook. Start organizing things. questions, observations. You might be able to see a pattern. Ask..what happened right before the meltdown..watch his face…and the things around him. *** check on one of the website that I put below to help with this***
I don’t understand everything that is happening but I do believe for most days..my son is happier and less frustrated. I should of pressed harder a long time ago.
You have done the best thing for your son- by reaching out. It takes a village.
We did a neuro-psych testing- it gave us more info. It was 8 hours of testing but i feel comfortable we on the right track.
I am reaching out to other parents on line and at the school. Which helps me alot.
The unknown is scary for these spd kids… (lights, sounds, touch, smells, taste…
this site helped me a lot
http://www.sensory-processing-disorder.com
(this site might give you ideas)
http://www.sinetwork.org/
I do really like this network too.
You will find peace.The OT is a great place to start.
He might need to be left alone during these meltdown times… to get tears and anger out…It hurts to listen to that…sometimes mine need 20 minutes of this to regroup and it is ALOT better. Each kid is different. I only thought of it because he did not always like being held as a baby..and when I would let him worm around and cry it out…(not long…it did help).
Thinking of you….
and it does get better…just breathe…you just need to try different things-
you know what does not work- and ALL of that info is very helpful to people who can treat him.
Jennie
jhope
There’s so much to grasp in the world of SPD. Are you a member of the sensory parents group on facebook? It’s a super supportive community of parents who have a ton of ideas and suggestions related to sensory processing disorder. There’s also an licensed OT who is willing to answer questions and give advice when needed. If you’re interested in joining, just let me know and I can add you to the group
I remember the beginning of our journey and how challenging it was. Don’t get me wrong…there are still challenges days, but things are easier to see now that our daughter receives services that work w/ her sensory system. **HUGS**
Sybil
WOW! Thanks for sharing your story!! I love how even though each of our stories are different, there are so many similarities.
Hildegunn
… its actually me and not a child I don’t have… but maybe it’ll help you a little??!!
I’ve actually both both sensory issues (didnt know they’ve made it a diagnosis and not just a symptom) and AS… and have found some ways that make my life far easier.
Since I have difficulty processing the information I get from outside I try to ensure that I have something that I can relaz with and use to shut off the world. I really read a lot… and always bring my cell with stuff to read (and a battery to charge it with just in case…). My ipod is also used a lot. Rather than having all that noise around me I can choose music to concentrate on. Sometimes I just have the headset on without music… cause it makes the sounds easier to handle. Since I’ve got sunlight issues – I also always bring sunglasses. My mother had real issues getting me to eat her food – but she found that if she mashed (food processor) the bits I did not like… or the entire thing, I ate it with no problems. (Make SURE there are no allergies first please) Onions for example. I just can’t handle the concentrated taste of it.. but I’ve eaten chips with onion taste. Also – if the kid is picky about the food.. it might be that the consistensy or a specific flavor is just… nasty. Maybe not the right word but… try to prepare the food in different ways… and maybe alternatives?
I’m mostly sensitive to types of bed clothing… and have found that I have to be careful about which type I use. The coarcer ones are directly painful. During childhood I also abhored brushing my teeth – almost had to be bribed into it… and I found that using an alternative type of brush helped. Touch too is something I need to control; I’ve found that I prefer far less skin contact – but if asked (or I want to) a hug can be really nice. (check the face when you take hugs – or ask him if you’d like him to give you hugs rather than the other way… – created friction between my mother and I and we got a much better relationship afterwards… even if we at the time had no idea)
But most of all… I’ve found that the more tired I am the more sensitive I get. Problem is; with AS I have problems organizing my day and when others are in control almost everything that happens is a surprise. After a while surprises just gets me really tired (as it probably does with everyone. … so I’m working on making a schedule that will help me not only get stuff done; but also to have it cost me less energy that I could use on something else.
Now; I know the kid probably do not have problems with all this, but you should sit down and figure out just what is bothering him. If you can – ask him about it. Maybe not ‘what is bothering you?’ cause to be honest – I’D struggle with that one.. but more – ‘is there too much sound?’ or ‘Is the light hurtimg? (hurting might be the wrong word… but you get the idea)… some things you just have to try out. And others things you’ll probably be able to see – if he squints outside when its sunlight… get the sunglasses – only be a tad careful about the color… and whatever you do – remember to also expose him to what he has trouble with at tiems… cause if you don’t he’ll get more sensitive. Some of it might also be selfpreservation. I’ve found that some fire alarms are really hurtful.. so when I find that a fire excersise is going to happen I get REALLY stressed… (even if I know about it – which is better than not knowing… but timeline your kid needs varies both on him and on what it is). … but afterwards… if it wasnt so bad… its alright.
Now – next time you go out somewhere he’s had a tantrum, turn around and consider just what goes on around you. He’s most likely got those processing issues too.. which means that all the people around him can not really be ignored. Then there is the light, the touches (if its really crowded), the sounds, the taste… if you use the shades, something to shut out the sound at least partly at first (to get him used to the movement), and then less ‘protection’ on the ears.. and maybe the sunglasses… it’ll be easier. Also… well… NEVER punish for a sensory issue. It just makes it THAT much worse cause then there is the agitation of knowing that not only does stuff gets too much; you’ll get punished afterwards too. … Sometimes one DO challenge authority… but that is something else entirely. … hope this helps somewhat…
Also – on the upside – As your son gets older he’ll have processed a lot of stuff and it will therefore cause less stress… and he might find ways to make his days easier; depending on the severity of his condition. If he’s mostly closed off in his own world (as I was for a while)he might open up… Make SURE that he does not spend his entire day on the computer (a blessing that we did not get one before I was older)… Also – consider your demands to him. As my started to expect less of me (that I mostly did not realise until she was mad at me for not doing something she taught I’d see… ); I started to be able to take in more information on what was going on around me… For me – I need clear expectations.. and prefer to know exactly how to do stuff and how long it is expected to take (… last might vary – but if I’m uncertain at the end product I either ‘hurry’ and botch it… or use a LONG time cause I don’t know when I’m done… and starting.. don’t even start.
… as I said- hope this helps somewhat…
… I’ve also written some ‘tips for parents’ here- http://junnights.tumblr.com/ (the second one – the rest is just rambling++ – and I happen to really like cats…
Hannah
In my first year I was diagnosed with carers fatigue, AKA life’s hard and it’s showing.
All I can tell you is that we came through.
There’s a lot of good advice in this comment section, but don’t feel pressure to take it all at once, take it as you can.
All will be well.
oxox
Tracey
Big hugs to you xx
I still feel like this every day, and the best advice I would give to you is to hold on. Hold on to your child and hold on to yourself, because it’s not going to be easy and we’ll never get told how long this journey will last.
Pick 2-3 things that you think are the most important (e.g. things that seem to trigger him the most) and work on them with an OT that specialises in SPD. Concentrate on them and not everything because I think it’ll wear us out.
I’m about to look into what courses are coming up for parent training – books are not my thing so this is the next best thing for me. Keep talking and emailing and blogging about your feelings – if you can find a support group in your area it really does help to have that space for yourself and O. x
Mysensorybaby
Wow! Strumming my pain with your fingers is the feeling I get reading this! My son is 5yrs and we have battled the world for him so far and continue to do so. Having a child that’s ‘quirky’ is exactly how we used to describe our lil man but we have had to admit that if he is ‘quirky’ then we need to be taught the language! Seriously being a mummy is a tough job but being a mummy to a child with a neurological dysfunction (I hate this word but simply do not know how else to say it) well its not just tough it’s often impossible! My hubby and I have spent 5yrs tearing chunks outta each other over our lil fella and well forget ‘us’ time it’s practically non-existent when nobody wants to babysit because H is ‘hardwork’ .
I tried to take H to the cinema the other day as a treat, that didn’t work out the way I’d planned AT ALL! You see we didn’t go to the usual massive cinema, I had prepared him for the change but clearly not enough! We didn’t even make it through the double doors before he went into extreme meltdown and threw himself all over the place while the ‘adoring’ public watched me try to calm him down with total contempt! Needless to say I too began to cry! My older 7yr old also cried! I found myself shouting at passers by “haven’t you seen a kid with SPD before”.
I guess what I’m trying to get at here, is that, your not alone. U still don’t have many of the answers. Still feel like I need to learn a whole new language! But I know one thing and that is – none of us are alone x big hugs too you x
Nikki
I honestly feel like I could have written this about my son, also called Oliver..
Big *hugs* to you, I have been where you are and although I still have rough days where I feel like a complete failure and like the wrong person to have a child like Oliver, it does get easier to cope with.
Help and support is key, you’ve already had so many great suggestions here but give yourself time too – it’s all so hard to get your head around..
Feel and think whatever it is you need to in the moment and please don’t bottle it all up inside.
Thinking of you and hoping things ease up soon x x x
Eden
I’ve been exactly where you are today. My son is now 8 and we’ve been dealing with this for over 5 years. Get your hands on a copy of The Out-of-Synch Child and The Out-of-Synch Child has Fun. These books will help you understand what you can do at home right now to help Oliver. Call your local Early Intervention Center. They will come to your home and start services much quicker than waiting months to see Drs, though do keep those appointments. Invest in a mini trampoline for your home. Jumping really helps to regulate sensory systems. Over time you will see what helps keep him calmest and what overwhelms him.
For now, accept virtual hugs and know that you are not alone in this journey.
Susan S.
First of all. (((((Huge hugs!)))) You are soooooo in the right place for support and to learn, learn, learn. My SPD bible, Raising a Sensory Smart Child was a real eye opener for me when I discovered it back in 2004ish. I hope that’s a book you either have or will have soon. It explains what is going on and has tons of practial advice and tips of how to handle this and that. Their companion website http://www.sensorysmarts.com is fabulous as well.
Rely heavily on your son’s OT to help guide you with regards to learning how to help your son’s body and brain get regulated and happy. I love the notebook idea- you will become a detective and will (well, you already are) know him better than anyone.
I have found that the my son’s pediatrician’s office isn’t very well versed with sensory processing issues. And the public school system here definitely doesn’t understand my son. I have had to initiate and work every single step of the way to get him a 504 Plan with accommodations; and what he has right now barely scratches the surface of what I would really like him to have. I have had to educate each and every teacher he’s had, the school counselor, and the principle.
You will become comfortable with all of this after a while. As with anything that’s new, there’s the initial learning curve. I’ve been at it for 7 years so far.
With regards to disciplining your son, the only thing that has worked for me is to always look for the motive behind my son’s behavior (is he self soothing? is he tired, hungry? is his system out of whack and he’s just trying to do something that will help him feel ok?).
You’ve discovered that discipline doesn’t work, and I learned early and quickly that it didn’t work for my son either. You will learn to recognize the difference between a (sensory) meltdown versus a tantrum- my son actually had very few true tantrums, but tons of meltdowns. In fact, as you learn the motivations behind your son’s behaviors, you’ll be able to solve most of his misbehaviors with hugs, earplugs, quiet relaxing spaces for him, and other calming and soothing techniques. Only after his system is calmed can you even begin to think about more traditional forms of “discipline.” I put it in quotes because the original meaning of the word it teach. The average parent doesn’t teach, but punishes.
I discovered a school of thought that is so perfect for these special kids we have. The tools teach a parent to teach a child to become problem solvers (instead of just dictating to them what to do all the time). Parents end up with responsible, respectful, reliable children. It literally has saved me so much time and energy (once I got through about age 4)- and it’s called Positive Discipline. If you want to check it out briefly, I have a page about it at http://mariner2mother.wordpress.com/parenting-resources/ .
Lastly, after a while, when you are getting a handle on things, and when you are not so frazzled, you will begin to see the extraordinary gifts that you son has. These kids are often brilliant engineers and the like (read up on Albert Einstein). Always remember that he has incredible gifts that you, as his #1 detective will help him to discover, uncover, and develop as he grows up.
Dawn
oh, sweetie… we’ve been where you are and still are some days. these replies are filled with the love and support you so deserve… your village. one thing I’d say is to print out these responses for your binder – and refer to them to absorb at your own pace. another thought is to give yourself some oxygen (check out the fabulous ‘Oxygen Mask Project’ for you!). things will get better… there is light at the end of the tunnel, and we are here for you. (((hugs)))
jo
Massive (((hugs))) to you!
We’re 2 years down the line, it gets easier as it becomes normal. Honestly!
Go easy on yourself, this is a massive thing to be expected to take in. You’re having to re-evaluate your parenting overnight with no guidance – or that’s how I remember feeling! Be kind to yourself, there’s not a wrong way to do it as long as you love him, which clearly you do
Think about where things are good, what things work well for him. Identifying the things he loves is really important, a favourite character can be really helpful. My little girl loves Thomas the Tank Engine, getting Thomas covers for her bed made her want to stay there, Thomas DVD’s in the car helped her deal with the sensory overload of driving, and so on. Thomas became my best friend, used to motivate, to distract, to reward and sometimes to bribe….
Keep talking and blogging, the ‘net is a fabulous place, good luck xxxx
Maya
I have a 10 year old who is also “not quirky.” J was diagnosed with SPD and later high functioning autism at the age of 2. He is high maintenance and exhausting. Just when we get over something there are new challenges that come along. He is very difficult and I am exhausted but he has made my life so special and seeing things through his eyes has made me a much better person. I have patience, tolerance, understanding and most of all an appreciation for all things “quirky.” You are doing a great job!!! Keep doing what you are doing. Trust yourself and hang in there.
Kate
Oh my word. I never expected this much support and understanding. I literally just wrote my heart out into the internet. Thank you. Thank you Thank you all. I honestly don’t feel so alone and even though I’ve never met a single one of you I feel that I have. I did print these out and I have ordered books. Again, thank you.