I got this from another group I belong to and I thought the story was great. I thought I'd share it-


THE LITTLE BUS
Carolyn Curran

I never knew anyone disabled until my son was diagnosed six years ago with Autism. When he was just two, I remember asking my husband how kids get to ride the little buses - they seemed so child friendly - I couldn't picture my `baby' riding the big bus. Talk about living in a vacuum. What a laugh that story's become. I now have four sons and three get to ride the little bus.

A few years ago, I was picking up my typical son from preschool and another mother complained to me that the boy next door gets a bus, while she has to drive her child back and forth every day. "And he hardly seems disabled, " She said. I felt a twisting of my gut and my left eye probably twitched uncontrollably, but I kept my
mouth shut. Unfortunately she started to seek me out, two or three times a week for this same discussion. Since I was PTA president then, she believed I could influence the district transportation policy.

Finally, on a day where 11:30 am felt like 10 pm, I looked her in the eye and said, "I know it seems unfair, so why don't we trade?

I'll take a typical child and drive back and forth and you can have an autistic child who gets to take the bus." I didn't speak with her much after that. In that short conversation, I couldn't possibly pry open her world to what the little bus really means.

Personally, on the `down side' that little bus means:

watching typical children run and play and laugh while my child floats alone in his own world,

spending over 15 hours each spring developing and Individualized Education Plan for each of my three children

meeting every 4-6 weeks with each of those child study teams to exchange notes, support each other and maybe switch strategies,

the silence of the phone - no calls for play dates here,

huge meltdowns of pure panic because my son can't comprehend that today we are going to stop at Super G before going home,

trying to explain to my sobbing 10 year old why he can't go on the big bus with his little brother, because he needs a different school, Concerta, Prozac, ear tubes, echo-cardiograms, EKGs, bloodwork, genetics, pediatric: cardiologists, ENTs, and GIs, intestinal biopsies, tonsillectomies, adenoidectomies, emergency surgery,
special diets, picture schedules, sign language, social skills
programs, sensory integration, evaluations, ABA, Verbal Behavior, DIR, physical therapy, speech therapy, and occupational therapy, and waiting, hoping and praying for the miracle of achieving an ordinary developmental milestone.

On the `up side' free transportation means

a heart that soars each time I hear "Mom" because it took
four years to hear it,

always believing in Santa Claus,

finding joy in an unexpected kiss from my child who doesn't like to be touched,

laughter that is genuine and deep,

finding peace, understanding, tolerance and patience where I had none,

unbelievable happiness when I hear "I did it" after weeks and months of trying

joy and gratitude for every inch of achievement because no one works harder than a child learning to walk while his peers run by, a child learning to talk while his peers tell stories and a child learning his ABCs while his peers read books.

I confess to have been ignorant and frightened of disabled people.
Once after church, an altar server caressed my oldest son's cheek. He couldn't speak, he had Down Syndrome. I felt nervous and uncomfortable. What a shame! I had spent thirty years in darkness about disabilities and now I could write a book. Now, I live on the other side of the fence. I love my four sons, three disabled, one
typical and for them, I am giving my life, so that there is a place in our community for them as happy contributing adults.

Would I trade for the big bus? I don't think so, I'd rather
we all ride the same bus - of comprehension of walking in another's shoes. Thank God, the little bus has taught me that.

So, dear mother, whose angst is caused by unfair school
transportation. I'm sorry I `snapped' at you years ago.
I wish for you a discovery: that the chambers of the heart become infinite when you know and love someone with special needs and that what matters most is not what you get, but what you give.

Carolyn Curran
President
Cherry Hill NJ Special Education PTO

By Tink on Saturday, June 4, 2005 - 12:01 am:

That was really great. Made me cry. Thanks for sharing that, Feona.

By Missmudd on Wednesday, June 22, 2005 - 12:23 pm:

That's a great story, I have one that rides the little bus, and thank God for it because he is making progress and is actually going mainstream for preschool in the fall Still going to be alot of phys therapy sessions and speech but we are getting there. Cant believe how proud I was when yesterday he said "we going to the doctor and next get chicken at donalds" Just the simple word "next" means so much, that he is forming multiword sentances, that he is describing time in first and next, just a whole bunch of milestone in just one simple little sentence.

By Tink on Thursday, June 23, 2005 - 12:46 am:

Isn't it amazing how much others take for granted, that we feel blessed with each day? It's wonderful to be reminded to be thankful for each step, word, or emotion that our children help us experience.

By Alonewith2 on Friday, July 1, 2005 - 08:15 pm:

My daughter, 2 1/2 is autistic, we just found out about 3 months ago. Having her in a normal daycare has been a challenge for me. The other kids don't understand that she is different. When my daughter plays alone and the other kids get into her "space" and she bites them, the teachers come to me and complain that "I need to do something". When we go to the grocery store and my daughter has a meltdown because she wants to stand and watch the lobsters and we need to leave, other mothers look sideways at me. When my beautiful baby girl screams in panic when she has to be seen by the doctor or at the hospital, strangers get aggravated at the distracting wails. How do you explain to others that she doesn't understand, that she's just scared. When they look at me like I'm a hateful mother because the only way to calm her is to squeeze her tight and yell her name loud above her own screams, my heart breaks. How do you explain to them that she can't help it. When they talk to her and ask her name and she responds only with incoherent babble, is saying 'she's autistic' the only explanation I can give? Do they understand that? I still get looks like I'm a bad mother, that she's just a bad child throwing a temper tantrum. And maybe she will never be potty trained. And maybe she will never learn to read. And maybe she will always scream bloody murder when I day "wait a minute". But I will always love her, and though I may lose my patience with her, I will always hold her tight and tell her how sorry I am that I got upset with her. But I'm thankful I have her, and I'm thankful for ger condition. She teaches me a lot about myself... about patience, understanding, and compassion, that parents of 'typical' toddlers may never be able to see or undrstand.

By Amecmom on Friday, July 1, 2005 - 10:39 pm:

Christina, I just cried when I read your post. My kids are typical - ecxept for a speech /oral motor delay in my son. When they go ape and people stare I feel like a failure, too.
Keep your positive attitude. My friend's son has PPD. He is in a therputic preschool and si doing amazing! Instead of having your daughter in a daycare where her needs are not being met, can you put her in a theraputic preschool?
Ame
PS Welcome!

By Marcia on Saturday, July 2, 2005 - 12:06 am:

My life is also one that includes little yellow buses. Six of the seven kids I have been blessed to mother have/had some degree of special needs.

By Tink on Saturday, July 2, 2005 - 01:14 am:

Christina, my son was diagnosed with autism two months after he turned three. I know exactly the position you are in and it's so hard. You have a huge burden on your shoulders but you love her all the same. I don't know where you are, but look into state-funded options. California offers disability pay for my son and that would help cover any costs towards his doctor's visits and therapy needs. They also have a program that pays for his therapy completely. My son's progress has been miraculous. There should be options out there to help you out. We even have family, marriage and individual counseling available to all of us. Please email me (my address is in my profile) if you'd like someone who has been there, done that to be a listening ear. Many hugs to you!

By Alonewith2 on Thursday, July 7, 2005 - 08:56 pm:

My daughter is going through a program called "First Steps" that helps children with special needs or developmental delays. Every thursday she gets an hour of speech therapy and an hour of occupational therapy. Generally these sessions go good for about 30-40 minutes, then the last 20 or so is a struggle to keep her attention and focused. The fits start, she begins to run and hide, tries to take the toys the therapist brings into her bedroom and so forth. She was just kicked out of daycare yesterday because they can't control her biting so I've set up an appointment with a "Certified Home" that has special needs capabilities. From what the First Steps ladies were telling me, she won't be able to go into preschool until she's 3. And to top it all off, she's on a 6+month waiting list at the Child Evaluation Center in Louisville, so she won't even get her 'medical diagnosis' until then, so until we get that done she won't get any extra support. Luckily, she is on Passport (KY Medicaid for children and pregnant mothers) and it makes her eligible for First Steps where I don't have to pay anything.
I have been looking into counseling for myself to help me deal with the stress, I've found one option, just haven't had a chance to call them yet to find out how to get involved, but it's through 7-Counties Services, so it's state funded.
I Think the hardest part about going out into public is the meltdowns. I've had people come up and ask me what my child's "Problem" is, and it's so hurtful. And like yesterday when I picked her up from daycare and I was informed that my daughter wasn't welcome back because a parent of one of the kids she bit is threatening to call the state on the daycare saying that my daughter is a 'danger to the other children there'. That just broke my heart, because she can't help it. It would be different if she was just being a bad kid, but she's not, and nobody seems to understand that.

By Tink on Friday, July 8, 2005 - 12:35 am:

I hate the idea of "labeling" our kids but I've heard of parents of children with autism printing up and passing out cards with a brief explanation of autism on them to educate and, hopefully, bring about some understanding of the hardships of a child with a "hidden" disorder. I never bothered since I could often leave the other kids with my dh but I'm assuming from your screen name, that may not be an option for you. I also couldn't see myself, stopping in mid-tantrum to dig through my purse, in order to hand out a card. My ds wasn't ever a biter so I'm afraid I'm really not much help here. I know that offering a piece of ice wrapped in a washcloth is often offered to a child that bites, to allow them to bite, teach them what is appropriate to bite, and to satisfy that sensation without hurting anyone. Would that help your dd? It sounds like you have so much on your plate right now. I'm glad to hear that you are at least investigating counseling. I hope you follow through on that. Unfortunately, most state help of any kind is going to be dependant on having an official diagnosis. I hope you have good luck with the daycare search. {{{Christina}}}

By Feona on Friday, July 8, 2005 - 07:15 am:

John didn't say a word untill he was two years old. It was like pulling teeth. he also didn't potty train untill he decided to at three and a half.

He now has above average speech so hang in there... she is really little.

You can go into yahoo groups

and see if there is an autism group in you area that you can get some support from also. Maybe you can met people from you own area that know the area tips.

I will see if I can find it for you.

By Feona on Friday, July 8, 2005 - 07:18 am:

http://groups.yahoo.com/

That is yahoo groups.

just put in

autism county

By Feona on Friday, July 8, 2005 - 07:19 am:

http://groups.yahoo.com/search?query=autism+bluegrass

This one is it I think.

By Feona on Friday, July 8, 2005 - 07:28 am:

Also do you have insurance?

You can get some stuff through your insurance. Once a week speech therapy and ot isn't enough for autism....

I could get john social work through my insurance. Social play social group play therapy - that sort of stuff.

Any kind of social play groups or speech or ot or pt therapy you can get her should help.

By Missmudd on Friday, July 8, 2005 - 12:39 pm:

Have you checked out your special education school district? I dont know if that is the program that you are in but I agree that dd needs more than what she is getting just once a week. My ds has a speech delay and some physical delays and he has been in the esd preschool since he was 2. When he was little they had him in "toddler group" where the moms and the children would go together. I found this very beneficial because I got to work so closely with his teachers and got to interact with the other children and parents. They worked not only on his speech and cooridination but also dealing w/ other children and adults besides his family. Considering her difficulty in her daycare I think that more socialization in a more protected enviroment would be good.

I feel for you alone, while my little guy isnt autistic and is generally good in public, I have had alot of difficulties even with medical professionals when they expect him to speak at his age level. I know that is just a small sampling of how difficult it must be for you. Hang in there.

By Amecmom on Friday, July 8, 2005 - 04:31 pm:

It sounds to me like two hours at a clip is way too much for any child! No wonder she's having a meltdown!
It sounds like you ar doing all you can.
Just keep smiling at the idiots who want to know what your daughter's problem is.
They are the ones with the problem! Imagine being so rude!
Ame

By Bekah25 on Wednesday, September 28, 2005 - 08:34 pm:

My lady that lives a house down from me her GS rides the little bus. He rides that b/c his dad would beat his mom while she was holding him. He know that she wound't throw the baby down. this little boy is so sweet amd kind. I like the little bus, the drive better then the big bus driver dose. I do not like my kids bus driver she speeds all the time and the school wontdo any thing about it