Parents with Special Needs kiddos
lucyhoneychurch
Posts: 576 Member
It's hard enough trying to eat right and find time to exercise, but I also know there's a lot of people out there with challenges because their SN child(ren) have always come first. My sweet boy is definitely at the top of my list, he has autism and I would give him my health if I could take the autism away. I have never put my needs before anyone else's, until I started changing my eating habits and made a commitment to exercise. I wonder if other parents out there have these challenges and are looking for others that understand what it's like.
I work out at night and when my boy can't sleep right away, stays awake and babbles to himself in the dark, it throws off/kills my workout routine. I can't take my kids to the daycare at the healthclub because they aren't versed in SN and wouldn't know how to handle his inexplicable meltdowns. But the small victories, having him sign AND request a favorite show, or finally learning to pedal a tricycle at 4 yrs old, are worth it every time.
I know how hard it is to make time for yourself while having a child with special needs. If you're looking for support, drop me a line and I'll help you along the way!
I work out at night and when my boy can't sleep right away, stays awake and babbles to himself in the dark, it throws off/kills my workout routine. I can't take my kids to the daycare at the healthclub because they aren't versed in SN and wouldn't know how to handle his inexplicable meltdowns. But the small victories, having him sign AND request a favorite show, or finally learning to pedal a tricycle at 4 yrs old, are worth it every time.
I know how hard it is to make time for yourself while having a child with special needs. If you're looking for support, drop me a line and I'll help you along the way!
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Just want to say how great of a mother you are! I was a teacher for 11 years. The last three was in a self contained special needs room part of the day, the other part was recent immigrants. I've always had special needs students in my room and loved them best, as well as my recent immigrants...not that we have favorites *lol*. Best of luck on this journey you can do it. And you aren't alone.0
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Hi, I know exactly where you are coming from. I also have an Autistic Son, He's Ten now, and i love him all the world and find him so funny at times It is definately challenging but hey ho. someone said to me once, God only gives Autistic children to the best moms and from what i have read, you seem to be one of them. Feel free to add me as a friend if you would like to. Sue.0
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Just want to say how great of a mother you are! I was a teacher for 11 years. The last three was in a self contained special needs room part of the day, the other part was recent immigrants. I've always had special needs students in my room and loved them best, as well as my recent immigrants...not that we have favorites *lol*. Best of luck on this journey you can do it. And you aren't alone.
And teachers like you who work with our kiddos are invaluable. Thanks for always looking out for our "favorites". Lol!0 -
Its not easy. I have 3 kids, and both of my boys are on the autistic spectrum. My 10 year old is in mainstream school, and my other son is 4 and moves up to mainstream school in september, with an educational statement and his own learning support assistant. (the school is fantastic with special needs)
It is difficult, and im not sure what the deal is there, but here most places have to offer inclusion or they can get done for discrimination. I dont think in real life that is actually applied much though. There was one club i sent my middle son to and they couldnt really handle him.
Now i have my daughter, who is not autistic, i actually realise how different it actually is raising children with autism. It is more dificult. Its hard to get the same relationship and to do the same things, but it is beautiful in its own way0 -
I have to tell you how impressed I am as well. I worked at a school for children with autism for awhile and I have never met more amazing, special children in my life. I love them SO SO much and they hold a very special place in my heart. I know how hard they can be as well. Ever since then I've had a feeling that I'll have an autistic child someday, and I don't even fear the thought. The community of parents of autistic children is so united and supportive of one another and I have the utmost respect for them. I think about how incredibly exhausted I was at the end of each 6 hour day with the kids - I can't even fathom how exhausted their mothers and fathers were. I'd come home bruised, missing chunks of hair, scratched and bleeding - and yet when I got home, I couldn't help but smile and anticipate the next day, because I'd get to see "my kiddos" again. It is SO worth the hard times. and I just want to thank you for bringing such a sweet spirit to this world.0
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have you ever read the poem "welcome to Holland" written about raising a child with Autism?
Welcome to Holland
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.0 -
I have to tell you how impressed I am as well. I worked at a school for children with autism for awhile and I have never met more amazing, special children in my life. I love them SO SO much and they hold a very special place in my heart. I know how hard they can be as well. Ever since then I've had a feeling that I'll have an autistic child someday, and I don't even fear the thought. The community of parents of autistic children is so united and supportive of one another and I have the utmost respect for them. I think about how incredibly exhausted I was at the end of each 6 hour day with the kids - I can't even fathom how exhausted their mothers and fathers were. I'd come home bruised, missing chunks of hair, scratched and bleeding - and yet when I got home, I couldn't help but smile and anticipate the next day, because I'd get to see "my kiddos" again. It is SO worth the hard times. and I just want to thank you for bringing such a sweet spirit to this world.
CarliFries, you have a big heart. I'm always appreciative of the people that selflessly work with kids with autism. I never forget the ones that work with mine. Thanks for the kind words.
Yes, WELCOME TO HOLLAND is a great, universal story, understood by everyone who ends up there. Thanks for sharing it, Suzy!0 -
hey there, i am a full time support worker for young ladies with SN and its hard going but the rewards you see at the end is invaluble of the time and effort you put in.. its going to be hard for yu but i find ill eat i work when there in the shower on same time as the have food. and i always plan night before hand as it means less fussing when at work.
hope there a few tips there you can use
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That's perfect, because I always plan the night before, making crazy lists because I will forget EVERYTHING if it's not on paper. :bigsmile: Thanks for the tips, they are very useful.0
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Bump again, for anyone who missed this. 0
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Hey there! I have four kids and it is my second oldest who has SN - also autism. He's almost 8 (so hard to believe!!). Of course I love all my children, but I have to confess that it is my autistic kiddo that really inspires me and pushes me to work hard and reach my health goals. I have to be ready and able to keep up with him!! While he has progressed SO MUCH over the years, and maybe can even pass off as being "normal" sometimes, he still has tantrums that can rival any two-year-old's (and I've got one of those too, :laugh:) and I need to be physically capable of actually (literally) *handling* him sometimes!
Sidenote: in May for Mother's Day he filled out a "mommy survey" thing in school - one of those fill-in-the-blanks things. For the sentence "My mommy loves to ______ " he wrote "exercise". Teehee!
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Bentobee, y'know what? That's exactly one reason I decided that I'd better work on my upper body strength more nowadays, not just try to lose weight. A few weeks ago I took my son to the eye doctor for the first time and I sat in the chair with him, holding his arms down and restraining him in my lap. When I got home, my arms were really sore, as if I had lifted quite a few reps for a long time! He's getting heavier and taller as he gets older, so working out has multiple benefits, not just health ones.
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I am right there with you! I have a 5 year old son with autism and a 10 year old with ADD. I started going to the gym last year to help with my strength because the 5 year old is VERY strong and he's a big boy! I didn't start the whole weight loss thing until just recently though...my health has started to be affected, so it's got to go! I HAVE to be around to take care of him! It is fantastic to find people who understand. I will be friending you!0
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Yup, my five year old has suddenly become big and heavy, much harder to hold back than even last year. He's not that aggressive but his tantrums can look pretty scary if you don't know how to handle them. Most people don't. They look at me to see if I am horrified (I'm not) or to see what I do to manage them. He responds to deep pressure so I give him big bear hugs and try to be firm but gentle while whispering in his ear. What else can one do? He's my boy.0
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its horrible when they have those tantrums and people look at you like youre the worst parent in the world.
Was particularly hard before i got the diagnosis for my eldest and i did actually just believe i WAS an awful parent who couldnt control their child. He used to meltdown several times a day as a toddler. he was hard work. Hes much easier as a ten year old, but he still does it sometimes, but i have better techniques and skills to deal with it now.0 -
How verbal are your kiddos? Mine has just recently gotten a lot better in that department...not anywhere close to perfect and it's been a lot of hard work getting him here. He's going to be starting kindergarten this year. I'm excited to see how that goes...he's going to be in the main classroom for most of the day. Not sure how that's going to work yet, but he surprises me on a daily basis! :-)0
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my 4 year old does talk, but hes way behind his 3 year old sister, and its not really two way conversations or anything. he does struggle, but i think having a brother and sister has really brought him on, and going to nursery etc.
My 10 year old speaks normally but he didnt speak till quite late. Hes still a bit behind when you hear other kids his age talking, but hes doing alright0 -
My guy exploded verbally between the ages of 4 and 7. On his 4th bday he was still very quiet and only spoke two or three word sentences. These days he's a total chatterbox. He is really a different child now than he was then. Once he hit elementary school he really took off. We are so blessed and lucky to have an AweSOme school system here with amazing support services for him. He's mainstreamed, but has his own aid to help him in class (and at lunch). 0
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Blessings to all the mothers and teachers!!!!!!!!!!!! I helped to raise a child with Cerebel palsey and he was my angel. My heart and soul. I think of him every day now that he is with the angels.
I suffer ever day due to shoulder and back problems........... Ladies Please Please Please lift with your legs not your backs and shoulders. I understand when you are grabbing a child haveing a tantrum you dont think but if you do it when you can think about it you will do it naturaly when you cant t hink about it.
I have put on almost 40 lbs since my guy left to be with the angels and I am trying to get it off. I just want to stop by and say you guys are the best. Give those children hugs and kisses and love them like there is no tomorrow.0 -
Really good to find you all on mfp.
I am 47 and a single mum to 3 boys. Only my youngest left at home now and he has autism, adhd, profoundly deaf (has bi-lateral cochlear implants, rare brain malformation and type 1 diabetic.
I have been wheelchair/bed bound for the last 5yrs.
Trying hard to get to my goal weight and have 10lb left to lose but boy is it hard to lose it now.
I am looking for shared support and motivation.
You are all welcome to add me as a friend.
We WILL get there in the end.0 -
My oldest son turned 5 last week and will be entering kindergarten. His speech is WAY behind developmentally, both expressive and receptive. I'm so happy to say he's no longer non-verbal, but it's a double-edged sword because the speech he does have is mostly scripting and echolalia. Hence, speech therapy (and OT) is on top of the priority list. It's taking a lot of hard work to move forward, but it is what it is. 0
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I have a 9 year old son with secondary autism. His is due to a 12 hour grand mal seizure (he went almost completely brain dead) that he had at 21 months (and at that time, he was way above average intelligence). 3 months later, he was diagnosed with leukemia, relapsed 19 months into treatment, and has endured 4 years of chemo and 17 radiation treatments to the brain and spine. He finished chemo in 2007, and had brain surgery to remove seizures in 2009. We are currently weaning him off of his last seizure med (of 3). He is in a school that has a special needs (life skills) department. He gets level 3 funding, which provides him with a one on one Educational assistant. The school has been a huge blessing to us.
The changes that we have seen since reducing his meds are INCREDIBLE!!! We went from him and his sister (who was 2 weeks old at cancer diagnosis) not able to spend any unsupervised time together... to the best of buddies. Seizure meds made him a little monster. I too felt like I was a horrible mom.
Wait a minute... this was about weight loss. lol After Josh's diagnosis, I lost 80 lbs and worked very hard to do so. Then BAM... the relapse. Hit me like a ton of bricks. I started emotional eating and gained 50 of that back. Now things are going good... and I have no excuses. SO... here I am.
If you want more of our history, we have a caringbridge site. caringbridge.org/canada/joshua
friend me if you want!!!0 -
Wow! What an amazing story! And what hardships! Oh yeah, weight loss.... well hell, I'd love to join you and learn how to share support. Funny how working out and eating right are helping us look and feel stronger, and yet through our kids we have gone through some of the toughest situations that others may never, ever experience but have made us stronger, no matter what our weight was/is. 0
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yep... and there's a huge difference between being overweight and letting it define who you are or what you do. Thankfully, it does NOT control my life. That in itself is a HUGE win. Glad to join you on this journey! 0
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I consider myself blessed to have found this thread and to come alongside you all on this journey.0
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Bump for later. I have a SN son and don't have time now to respond....all ya moms know what i mean!0
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I have a child with special needs as well. He has an extremely rare condition called Escobar Syndrome, which is the genetic version of Arthrogryposis- which means joint contractures. All of his joints are contracted and along with the genetic side of this comes webbing (i.e. extra facia) and severe scoliosis. He (we) has had 6 surgeries in the last year (he is 16 months) and we have another big one coming up in October. He is a twin and his twin is unaffected. My 6 year old is unaffected as well.
Owen is heavy now at 16 months, with all his braces and stuff. I cannot even imagine how much harder all this lifting is going to be over time. We are adjusting the idea that he will most likely be in a wheelchair and we hope for some ability to walk- even if just in the house. His knees and feet are some of his worst joints.
It's really really really hard to make time for yourself, or to not feel guilty, to put your needs before your family even for just one half hour a day. I also think it's the healthiest thing we can do. I know that with all these life changes over the last year, I have never been more stressed, nor has life been put in better perspective for me. I need to get healthy. I need to be able to handle the physical aspect of having a physically disabled child.
It's great to meet you all!0 -
scsedey143, I totally hear ya and feel ya. I find it interesting that while I initially wanted to lose weight just to stop being so big and bloated from years of self-neglect, the dual purpose is to get stronger so that I can handle my growing son (I mentioned this earlier). I never, ever thought that was something on my agenda. I also never thought I'd have to learn how to be a speech language pathologist to help my son acquire more [any] language, or an amateur gastroenterologist to figure out why my son keeps becoming constipated (NO, people, it's not just lack of fiber) and what I can help him use besides Miralax.
I've been eating pretty clean lately, too, except for the McDonald's Angus Burger w/o cheese + fries I had today after I took the kids to a 10:00am movie for the first time. Nikko (my ASD kid) sat next to me, squirmed a lot, kicked the [empty] chair in front of him, but did NOT freak out in the darkened theater or babble too loud. I'd call that a success! I wanted to reward all the kids for good behavior, but I guess I ultimately suffered by getting myself something. I shouldn't have done that. :P Now it's off to drink more water and find out how to cram in some exercise after Nikko's ABA session to make up for the bloating that's bound to happen from all those fries. :sick:0
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