How many of us are Autism Moms?

cressievargo

My 7 yo has an ADHD-CT diagnosis and anxiety. He is being referred for neuro testing, probably will happen this summer (you know how wait times go!). Ped suspects Asperger's.

We've been up and down the roller coaster of diagnosis. He was first screened when he was 4, they said low IQ, exhibits traits of ASD, speech impairment (limited vocab). Well, his preschool teacher didn't agree with the low IQ, and the speech therapist at his school didn't agree with the limited vocab (nor would anyone who actually knew him). The testing was severely flawed (he did play therapy in the same room and he knew where the toys were and it was WAY too distracting, and he did NOT like the one woman at all (for starters)). I have heard from others that the one tester is a little overboard...and I agree. My husband didn't like her at all - and he gets along with everyone.

Then, this year after a meltdown at school just before the holiday break, we talked to the ped, did the Vanderbilt and that shows the ADHD and anxiety. He's on meds for the ADHD and that has helped a LOT. There were some hiccups at first - we didn't have him on an afternoon dose and he was awful later in the evening when meds wore off - and had a hard time sleeping. Adding the 2nd dose has really helped with that, as has the nicer weather / increased physical activity.

I am curious to see what the neuro testing says, because we also had him retested last year by a psychiatrist - who said no ADD and IQ of like 114 (compared to 80!! the first time).

I'm to the point I don't care what his diagnosis is. I just want to know how to help him!! He is super smart and I hate to see his other issues hold him back / make him dislike school.

KellyBru3

I am not an Autstic Mom but I am the mom to severely special needs son. He is 8 years old and was born with hydrocephalus and cerebral palsy. The amount of fluid that had built up in his brain caused him to also be born with a visual impairment and hearing loss. He is non verbal and isn't able to walk. He also has recently been diagnosed with epilepsy. Despite all of this, he is an amazing little boy that I don't know what we would do without. He communicates with sign language and his smile is infectious.

I actually am one of those people who doesn't eat when I am stressed. We had been in a really good health pattern with him for a while which my weight gain was the result of. I was finding myself getting very tired after carrying him and new that I had to change all that for him. He needs me to be healthy and strong (especially when my husband isn't home to help) and being over weight and unfit just isn't an option. So happy to see there are others mom's out here that have a special child.

MummyOfSeven

Two of my seven children are on the spectrum, both boys aged five and fifteen.

Bubble (aged 5) was only officially diagnosed in January but, due to our experience with Mr15, we've known since before he was 2yrs old. He has now been statemented and has an LSA for 15hrs/week, ie. mornings. He goes to a mainstream school and fits in quite well. My only real complaint is that none of the teachers at his school, including his LSA, have had any Autism awareness training whatsoever.

Mr15 also attends mainstream school and always has done. He's never received any help. In fact, it is only this school year that his teachers have been made aware of his AS, despite me seeing the school SENCO at least once or twice every school year to ensure that they are up to date. She always assures me that his teachers have been notified. Yet, year after year, I attend parent's evening and find that most of them don't have a clue!

Mr15 is now in his first GCSE year and started his exams this week. I got a call from the exam coordinator last week asking me why I hadn't signed some forms for my son to get 25% extra time on his exams. I didn't know what he was talking about. Apparently, the SENCO is supposed to notify us of things like this. HA! The only reason that the woman's still in that job is because noone else wants the hassle.

It has taken the school three months to provide Mr15 with an appointment with the school counsellor. He's aware enough to know that he's 'sinking and we've been told that he probably has clinical depression. This isn't completely down to his AS, but due to some outside factors that (I do apologise) I can't talk about for legal reasons. The doctor has referred him back to CAAMHS and we are awaiting an appointment with them.

*aaaand breath*

nikki_0522

I have a 5 1/2 year old son with a diagnosis of PDD-NOS. He has finally become very verbal in the last year, but is still speech delayed. After being thoroughly with the public school Special Ed Dept., we withdrew him from school and we now homeschool him along with my 10 year old, whom we were already homeschooling. He has made so much progress since we started homeschooling, and he is a completely different child than he was a year ago.

pixelberry

My twin 4-year-old sons have been diagnosed with ASD since around 18 months old. While one twin has made amazing progress, the other still has major oral sensory issues, is more of a rote speaker than spontaneous, and is in need of more intensive therapy which we're now paying out-of-pocket for with ABA therapy.

With the never-ending parade of kids home sick, teacher meetings, IEP meetings, laundry, lunches & dinner, dishes, vacuuming, reading stories, clean-ups, I still find or make time to workout. It's rougher on some days than others.

AriesGrl

I have two boys with Autism...my 15 yr old has Aspbergers, Anxiety, Trictatilamania (hair pulling), tourettes, and OCD....and my little one is fully Autistic but very high functioning with numerous behavior issues, textures, and OCD as well...he is so smart that he is able to stay in a gen ed kindergarden class with a one on one sp ed aide....we are currently doing behavioral therapy 3 times a week in the home and hoping that will help him improve be 1st grade!

LesliePierceRN

my 13 year old son is autistic. It's been a grueling ride, but he's nearly recovered. Without meds. Or diet. We started with ABA and Positive Behavior Support therapy. His diagnosis really didn't affect me the way it does other parents. You see, despite the world-rocking that comes with "You son has autism" that other parents feel, this diagnosis was not the worst thing to ever happen to us. He has an older sister with a very rare, and very deadly, metabolic disease. Autism wasn't going to kill him, the way his sister's disease may kill her. Autism is just a different way of looking at and responding to the world.. all we had to do was figure out how to be his translator with the world until he figured out how to do it himself. And I don't mean to imply he was high functioning either.. he was non verbal and had behaviors. He was and is freaky strong for his size and age. He could be volatile. But we've never let his sister's disease run our lives, and we weren't about to let Autism do it either. And since we love them equally, we worked just as hard to recover him as we do to keep his sister alive. Now, both are in their teens and very happy and healthy. We are so very blessed.

sneekspeete

I am a single mom of a 7 year old daughter ,Nicole,who is autistic.She is the light of my life,corny but true.I never had any patience until I had my child.Being the mom of an autistic child,I know nothing is impossible.Every little triumph is such a big deal! Everyday little things that parents of non-autistic children take for granted,mean so much when my child does it. She wwas 5 before she looked at me and said I love you mommy- I cried!!
I wouldnt know what to do with a "normal" kid!

dajackson81

My son Matthew is 8 years old was diagnosed with autism at 2. The only time I really stessed about his diagnosis was on the day that the doctors confirmed that he was not a typical kid. After that day I just said screw it this is the hand I was dealt and now I just take everything one day at a time. If people look at him when he flaps and yells and throws temper tantrums it doesn't bother me one bit. Who are they to judge me?

Also he has no brain to mouth filter which can be hilarious at times. My husband, myself and my 3 boys were in a mexican restaurant about a month ago. While the waiter was handing us our menus my son looks right at him and says "welcome to America" I just about died of mortification (and laughter in the car on the way home)

jaxbeck

My son is PDD-NOS, I believe he has aspergers

contingencyplan

My mom is an autism mom with a son with autism (me).

nwhitley

Kudos to you moms!! You definitely have my respect and admiration. I teach in an inclusion 5th grade regular ed. classroom, with 2 autistic children and 1 with aspergers. I know it can be difficult parenting children with challenges. Take time to take care of yourselves too!

Triquetra

I have a 9yr old "normal" daughter and my 13 yr old "different" son. He has a chromosome deletion called 15q11.2 microdeletion between breakpoint 1 and 2 that apparently is quite rare. He doesn't have autism but this deletion causes autism behaviours in most areas, he also has severe ADHD, sensory integration disorder, learning disabilities, heart defect, behaviour issues, etc, etc.

Even though he is not labelled Autistic I have been dealing with most of the same things you guys have. It is definitely a challenge, but so worth it!

abibrand

My daughter isn't autistic, but she is a special needs kid. She has a condition called septo-optic dysplasia, so her optic nerves and pituitary gland didn't grow in properly. This makes her legally blind, and she has to take growth hormone and thyroid medication every day.

Not only does the stress and busyness add to how hard it is to loose weight, but she's so tiny, she has a very high fat, high calorie diet. Peanut butter, full fat milk, cheese, bread. Anything that can get her to eat. It's hard with so many things around the house that she SHOULD eat and I SHOULDNT.

mooglysmom

My oldest was diagnosed at 3 with ASD. I felt relief, though my husband still does not believe it . He has ADD and OCD tendencies as well. No brain to mouth filter either, lol! He's a really great kid, I couldn't imagine life without him! He started speaking when we put him on a gluten free diet with me, and he may have Celiac disease like myself. We recently moved to a better school district and he seems to be making great progress.

jadedbutterfly71

we should make this a regular checkin with each other. As moms of special needs children our lifes can be so different from others that it would be nice to have a place to talk. about anything!

I am a very outgoing person but I cant help but avoid playdates and public places becauseof Eli's behavior. because Eli looks just like every other little boy out there people give me dirty looks when he behaves the way he does cause they cant "see" that something is different and its hard to take the looks and judgements about my parenting. I am a great mom, they just dont know. Those stuations are the ones that usually have me running for the nearest fast food place and it hard. anyone else feel like they withdraw from public outings and playdates for fear of what might happen?

^^^^^ This.
I'm not a parent, but my 11 year old great nephew lives with me. He was diagnosed at 3, but we had our suspicions way before that. My mom adopted him at 18 months after my niece lost custody of him at 9 months. Mom and I have raised him together, and so love him. People can be so mean, though. It wasn't so bad when he was younger, but the older he gets, the more noticeable his actions are, and becaus he looks "normal" we get dirty looks for "allowing" his behavior. We talk about how we avoid situations to protect our boy, but then again, how can we prepare him for life, if we OVER protect him. Such a fine line...

Kitzey

I'm a mom of a 17yr old Asperger's boy who graduates this year!!!! * happy dance * YAHHHHHHHH Trust me the hard work pays off It's been a longgg gruelling year for us as he's terrified of the changes coming up. So needless to say this summer will be stressful seeing as how he's 17... doesn't think he needs medication right now.. how do you get them to take it? Shutting down because of stress of the "unknown" etc. Some days it's difficult not to eat for "emotional" reasons these days... but I am perservering!!

He wasn't diagnosed until he was 8... I knew something was different years prior but the pediatrician just kept telling us it was ADHD. He's ADHD, OCD and Asperger's.. quite a handful on days that aren't quite going his way.. but other than that one of the most gentle, kind and generous people you would ever meet.

Erisad

I'm a 22 year old with Asperger's. I don't have my license yet, I have a job and a Bachelor's degree though. I was a very difficult child to raise as I was constantly screaming and escaping from the house when I was a toddler. I want to be independent so I can prove that I don't need to rely on others for everything. My mother and I are on this weight loss journey together so I'll do my best to support her and be helpful to make up for if I screwed up her life for being born this way.

contingencyplan

I'm a 22 year old with Asperger's. I don't have my license yet, I have a job and a Bachelor's degree though. I was a very difficult child to raise as I was constantly screaming and escaping from the house when I was a toddler. I want to be independent so I can prove that I don't need to rely on others for everything. My mother and I are on this weight loss journey together so I'll do my best to support her and be helpful to make up for if I screwed up her life for being born this way.

I was a difficult child too. I was not an escape artist though. I liked to hide. And I was good at it.

TKHappy

I have a 9 yr old son who has Autism! He is part of my reasoning for being the healthiest I can possibly be!! Also out of all our kids he's turning out to love fitness LOL...they actually have Yoga time for him at school because it helps calm him and transition him into his day!