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Entries in special needs (10)

Tuesday
Aug032010

Bittersweet Travels

I'm getting ready to go away for five days for a conference. Alone. I think my son knows something is coming because he has been whiny, clingy and just all around a complete mess. This is doing nothing to help ease my guilt.

We have been apart before during his month long hospital stay, but he was much younger then, only 5 months. And even then I drove every night to see him after work and on the weekends.

Then there was the time, when he was 10 months old and I left him in California for a few weeks, while I packed up our belongings and put our house up for sale to move from Texas. But that was two years ago. 

I certainly felt guilty then, but I eased my feelings by reasoning that he was young and would not remember it. Plus, he was with my mom both times so its not like he was alone.  He was loved and cared for.

But I am worried that, this time he will remember. Yes, he will still be loved and cared for...but he will know I am gone.  I imagine it must be hard to be him sometimes, unable to communicate your true feelings. He is limited by the ASL we have taught him.  

So many things are running through my head. I should have prepared him better for these moments. I should have taught him about calendars. I wish he could hear me on the phone. And I am worried that this may have a lasting effect. This is not the kind of memory I want to create just a few weeks before a major surgery. 

Five days and five nights to a two and a half year old might as well be an eternity. He has no real concept of time, yet.  I'm really struggling with how to explain this. My absence. I keep running the words through my head. What vocabulary words does he know and understand enough to explain this?

Tomorrow means nothing, certainly not in terms of hours or days on a calendar.  Later, usually means 'after we finish what we are doing now.'  Wait, means 'just hang on a sec, it's coming.' He doesn't have the words for this. Where is Child Life when you need them?

With only 48 hours to go before this trip, my only hope is that everyone here will keep him busy and calm. And that when the realization that I am not home hits it, will only last for a few minutes and subside. (I hope.)

 

Janis Marie is a full-time mom, freelance writer and blogger. Highly regarded and respected for her ‘tell it like it is’ approach; she created and maintains a blog, Sneak Peek at Me to chronicle her son’s life and medical journey. 

Through her blog and affiliations, Janis works year-round to promote awareness and acceptance for those living with a rare disease diagnosis.

She’s also a contributing writer to several online media outlets. Some of her published work can be found at She Posts, 5 Minutes for Special Needs, Complex Child and RARE Blog (Children’s Rare Disease Network).  

Janis, a self proclaimed social media junkie, can also be found on Twitter and Facebook.

 

Monday
Feb082010

Things are not always as they appear

Calvin is sitting across the table from me as I write today. He is having a Mom imposed day off from school because I felt as though he would not be able to keep it together and have a successful day if he went to school. Staying home means doing work in workbooks, it is not a free day but it is a day when he does not have to deal with bullying, frustrations, disappointments  and having his buttons pushed because others think that watching him explode is so much fun.

I have been warning his school all year that this would happen, that one day he would blow up and hurt another child. He needs structure, he needs adults to step in a help him when he is overwhelmed, he needs adults to see that it is going to happen and do something before it does. The staff at his school heard me but they were not listening. They did not believe me, they did not think that this little boy was capable of such things and because they refused to listen to me a child got hit with a chair on Friday.

They are listening now.

Sadly it is too little to late. Now that Calvin has raged at school he has nothing to lose, he has no reason to try to keep it together.  All  the other kids in the school will have a great time watching that kid with the short fuse blow his top when they tease him on the yard.  Kids can be mean, few kids understand what it is like to be different and even fewer know what it is like to be  in the situation my children are in.

The staff believe that he is in control when he blows, that he choosing to lose his temper. They do not realise that he reacting from a place of fear, a place that is deep within his memory that he not thinking about it but instead just trying to protect himself from the perceived threat. We all know that the other child who is teasing him is just doing it to see the show but Calvin doesn’t know that. It triggers a fight or flight reaction in him that is so deeply ingrained within his being that it is automatic.

He has this deeply ingrained reaction because at a very young age he learned that the only person he could depend on was himself, no one else could be trusted. Sometimes the big people in his world took care of him and sometimes they did not, sometimes the fed him, sometimes they comforted him and other times they just left him to cry. Left him to wonder why no one was meeting his needs, why his cries were unheard or ignored when he clearly needed something. His brain was affected by this neglect, his brain did not develop in the same way of that a child who is cared for and has their needs met lovingly.

Then other adults came into his world and moved him away, separated him from his sister and placed him a foster home and told him that he would be safe and taken care of here. He visited with his Mom sometimes and sometimes he went to visit and she did not show up reinforcing his belief that adults could not be trusted. He started to misbehave at school and in his foster home, he was punished and made to feel as though he was a bad boy. None of the adults in his world realised that his behaviour was speaking volumes about what had happened to him, he was telling them but they could not hear him because they did not really understand his language

This went on for 3 years before Calvin was told that he was going to be adopted and that there would be no more moving around. Calvin did not believe us when we told him we would love him forever, that we would always be there for him. Why should he believe us, adults are not to be trusted

Everyone told us he was a handful, he had a lot of behaviour issues, had been suspended numerous times, refused to use the bathroom, was overly affectionate and could not be trusted to be alone. We were not suprised by his behaviour, no wonder he acted like that, his life had been one traumatic event after another. By 8 years old this child had more trauma than many people have in a life time.  

We have worked really hard to teach Calvin that we will take care of him and meet his needs, that we will never leave him no matter what he does, that he can be angry and tell us that he hates us and that we will still love him.  He is starting to realise that we mean it, that as his parents we can be trusted. He does not trust us all the time, he is still working on that but he has come far in the last 18 months.

Even though he is starting to be able to stay regulated and in control at home it is hard for him to maintain that control when he is not with me. He uses me as his anchor, he knows that I will see when he is becoming disregulated and help him gain control by talking to him about what is going on. That is why school is so hard for him, there is no one to help keep him regulated because all the staff wait until the behaviour occurs rather than watching for the signs that the behaviour is coming.  Once he is disregulated he goes to that fear place in his memory and reacts from there, he does not stop to think, he just reacts because he is scared that no one will keep him safe and so he must keep himself safe at all costs.

This is attachment disorder, this is what happens when children are neglected and experience trauma. Calvin is not alone, there are many children who are just like Calvin.

I wish that the world understood attachment disorder. I wish that the world understood the profound effect that neglect that has on a child’s developing brain. I wish people would listen to those of us who have taken the time to learn about attachment disorder and choose to parent children who are affected by this preventable damage when we try to explain our children to them.

J. blogs at Stellar Parenting 101 where she talks about raising two wonderful boys and all the challenges that go along with being their mom.

Tuesday
Dec152009

Lucky

My special needs child is six years old. That means he's been in the special education system for about three years. Yet, somehow it seems like I've been doing it forever.

In those three short years we've fought for my son Jack's autism diagnosis, fought to get him the right services, done endless evaluations and observations, combed through more reports and IEPs than I care to remember, hired an educational consultant and an attorney to get him those right services, and endured many phone calls and notes home from the school about the things he's doing there—both good and bad.

It seems like we've been fighting and struggling for so long.

And there is still so much to do.

Through it all though, we have somehow managed to luck into the best group of people who are looking out for Jack. Even last year when we were sitting in a high pressure IEP meeting with our attorney and educational consultant and were battling it out with the county over what Jack needed to be able to succeed in school, I felt as if the people directly responsible for his education and well-being really wanted to do right by him.

Part of this is due to Jack's amazing charisma and my entire family's efforts to be a cooperative, helpful, amiable part of his team. But a big part of it is that the administration and staff at his school are incredibly good people.

I was reminded of this last week when I was dealing with a pretty serious situation with the school. I really don't want to go into details, but it was something that could have been extremely volatile if the administration were not so amazingly understanding about Jack and his disability.

I have heard so many horror stories over the past three years from people whose children are in other schools. I've heard good things too, but c'mon, every single one of us here knows how hard it is, even under the best of circumstances. I don't know how I got so lucky.

Jack has teachers that welcome me into his classroom every week. He has a principal that will hug me and cry with me when I need it. Jack's school environment is such that I have never questioned that he is wanted and valued in his mainstream classroom.

No, they're not perfect. But neither am I and neither is Jack. (Although he's close.) But Jack has a team that understands that even if I have to be a squeaky wheel that I am doing it for the good of my child and they understand that.

How lucky am I? But, also, how unfortunate that I have to feel lucky to have such a situation. All of our children should be afforded this help, support, understanding, love, and acceptance.

I wish for all of us that we are able to find these environments for our children that help us get the support and respect that they deserve.

Stimey blogs about her life with Jack and her two other children at Stimeyland. There, she tries to see the humor in it all. She also runs an autism-related events calendar for Montgomery County, Maryland, at AutMont.

Saturday
Jul112009

Symptoms Of Parenting A Child With Special Needs

My apologies for missing my original submission date of July 6th.  I can honestly say that I think my short-term memory has suffered quite a bit this past year!  Sometimes it freaks me out a little...I have to keep the hypochondria at bay and hope assume this is not the result of early-onset alzheimer's.  And let's not forget the depression and anxiety that consumed me nearly a year ago in the form of feeling the need to take gulps of air in order to complete simple tasks, (like just getting my boys into the car), and left me in tears most days.  Or what about the  10 9 lbs. I put on soon after realizing I needed to take control of said depression and anxiety and got myself a wee little prescription for zoloft?  Could the depression and weight gain actually be associated with the post partum thyroiditis I had after my youngest was born?  Or is it from the PCOS my doctor in Texas diagnosed me with and then my doctor in California told me I didn't actually have?  And my allergies.  Oi vey, my allergies!  Are they a result of my immune system failing me as it did my mother around my age?  Am I going to end up just like her; with rheumatoid arthritis? 

 

Say it with me folks...'SHUT UP, DEBBIE!'

 

So while I very well may have thyroid issues that have lead to weight gain and depression, and I could potentially one day be told that I have arthritis, I'd say my medical diagnosis is really none other than:

 Duh-You-Have-A-Kid-With-Special-Needs-Itis.

I haven't figured out if there is a medicine or vitamin supplement that will treat this condition, but I promise I'll share it with you all if I do.  Meanwhile, I'll put 'bandaids' on the things I can:  Zoloft here, some fish oils and b complex vitamins there;  Retail therapy, red wine, and the occasional pedicure; A few curse words, a night out with dear friends; Oh, and blogging.  We mustn't forget blogging!

 

 

 

Tuesday
Apr072009

Typical

I tell folks these days that I’m a full-time stay-at-home dad and part-time artist. Most weekends during the warm months I travel to art shows and festivals to sell my paintings. This has been a great opportunity to meet exceptional families and make them aware of the art therapy we use with my son Ben.

It always thrills me to see a family pushing a child in a wheelchair among the vendors’ booths on a bright sunny Saturday afternoon. This tells me immediately that an exceptional family has chosen the less traveled road of participating the best way they know how in the world of <s>normal</> typical people. You see, it’s not easy for us to take part in typical activities.

This past weekend was no exception. I introduced myself to the parents of Carrie, a young lady with CP the same age as my son. Had it not been for the fact that Carrie sat in a wheelchair and her arms were flailing about like she was directing a symphony (which she very well could have been) you’d have thought a typical family of four was visiting an art festival on a typical day during a typical vacation. But I know their trip into the typical world was nothing close to typical.

Venturing out into the world isn’t easy for us. After packing up Sunday I drove up the coast to meet my family at another vacation spot. While discussing this blog post with my wife I realized she could directly address the frustration we experience trying to get from point A to point B.

With work being so very stressful and demanding lately I was very much looking forward to getting out of town for a week of vacation. All I wanted was a change of scenery to escape from the reality of life. By the time I was half way packed for the trip I was so tired I just wanted to give up and stay home. The physical workout of preparing to leave the house was almost too much.

Lifting Ben in and out of the car to run the pre-trip errands had my back aching and the sweat pouring. Preparation to travel has become like labor during childbirth. If women remembered the pain there would never be second children. But time goes on and the longing for a sweet baby grows so strong we forget the agony and think, “I can do it again - it wasn’t THAT bad.” As time goes by I forget the pain of the lifting machinery and equipment… and Ben. I also forget the mental fatigue that comes from trying to remember everything needed to keep Ben healthy. Not only do I have to organize all of his medicines I also have to find a way to work Ben’s care into the sometimes cramped quarters of a vacation spot. That alone can drain the fun out of the experience. As much as I long for a relaxing time away from the clutter of our home and the mundane routine of our life, hours into vacation I just want to be back home where I don’t have to fret about something I forgot to pack.

As Ben grows heavier we are becoming more and more reclusive. After the physical strain of loading and unloading Ben, his wheelchair, and everything else that has to travel with him I get fatigued and grumpy. So after arriving at the mall or a store I try to maneuver a wheelchair in spaces not made for one - the frustration grows. Then I notice strangers who look out of the corner of their eye who think I don’t notice – the volcano is ready to erupt!

When Ben was young and a precious infant/toddler it was no different than hauling any other small child out into public. We were able to use typical strollers which were lighter and smaller; and of course we carried a lighter child. Ben was still a baby and everyone loves a baby – strangers warmly and openly accept even a special needs baby. It’s only after they turn into older children or young adults that society works so very hard against them. Over the past nine years I have seen other exception families who appear to have a chip on their shoulder. I swore I would never be that way but after years of this uphill climb the burden becomes so very heavy – both symbolically and literally. It’s hard to accept what is considered typical when you’ve had to fight a battle just to run the typical errand with a non-typical child.

Even though disability rights have been at the forefront of legislation the past few decades much is still left to be done. Access can still be difficult. Handicapped parking is taken advantage of almost everywhere we go by people who have no business using those spaces and enforcing the law against that abuse is non-existent.

The financial burden we bear is unfathomable even without the current economic situation. Most exceptional families are broke. Despite having some government resources the help we get is few and far between. Some time when you have a few minutes to kill Google “special needs equipment” and check out the prices at on-line catalogues. You will then see that regardless of our current need for a lift or a ramp there’s no way we could ever afford one. In fact there is no current lift that can be adapted to either of our vans which means (you guessed it) we actually need a new van!

It is no wonder that we, the non-typical families of the world, become bitter, cynical, disillusioned, and sometimes very angry. If you are a typical individual keep these thoughts in mind the next time you pull up to a crowded grocery parking lot and eye the handicapped spaces thinking, “I only have to pick up a quart of milk…”

Bennie & sometimes Joan blog at “A Work of Art: Raising Our Exceptional Son.” And yes, Bennie was almost arrested at a Myrtle Beach, SC Wal-Mart a few years ago for attempting to embarrass a healthy woman for using a handicapped parking space.