I need hope, please, please help.

Jennifer - posted on 07/26/2009 ( 51 moms have responded )

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I know my 17 month old son in autistic. I am waiting for an evaluation, but I know. I have just very recently come to this realization. Probably because it took him over so quickly. He was a different baby 3 weeks ago, and a couple of months ago he smiled and laughed all the time. He loved to cuddle and followed me like a shadow. Now, he is in his own world. He rarely comes to me except when a noise upsets him. He has lost total interest in toys and paces all day long while flapping his hands. He has no words. He mostly squeals. He does not point or answer to his name. He does not look me in the eye. He does not play the games he used to like peek a boo. He cannot answer even the simplest command like "sit". He puts everything in his mouth and licks the stove, chairs, floors. He used to cry when I put him in his crib and reach for me. Now he shows no change in emotion and simply goes to knob on the mobile. It is like I am not in the room. He toe walks frequently.

I have called an early intervention center and have been waiting 5 days for them to call me back. I have a referral for a pediatric neurologist and am waiting to get in. Every day is an eternity and I die 1,000 deaths everyday. I cannot stop crying. I am completely and totally devastated. I feel alone and terrified. I cannot function. I am afraid I will never here his voice. I am afraid he will end up in some group home as an adult as we are older parents and will probably be gone by the time he is 40 or 50. I am experiencing a grief I have never known and feel empty. I have become a terrible mother to his twin brother as I obsess over everything William does, every arm flap, every time he stares at an object. I feel I have lost him. I don't know this baby, even though I love him desperately. I have no one to talk to. I don't know anyone going through this. When I tell friends they just say how sad. I have no answers. I went to the story yesterday and spent a ton of money on gluten free food. I cried in the grocery store like a crazy person. I have no idea what I am doing.

Has anyone gone through this? How are your children now? Do they speak, do they hug you? Do they have friends? Do they go to school? Is there anything I can be doing now during this waiting time to help him. Please, any advice is appreciated. Thank you so much for your time. God bless your family.

Jennifer

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Carisa - posted on 07/26/2009

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You need to educate yourself. The 2 books that I fell are must reads are "The out of sync child" by Carol Stock Kranowitz and "Overcoming Autism" by Lynn Kern Koegel. Don't panic this isnt something that will be fixed with an appointment. You need to take this energy and focus it. Love your son, work with him on eye contact, and praise him for any communication he shows you, even if it is a grunt when you ask him something. Hang in their mom!

[deleted account]

Here's a little poem that I find inspiring..



Most women become mother by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?



Somehow, I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.



"Armstrong, Beth, son. Patron Saint, Matthew. Forrest, Marjorie, daughter. Patron Saint, Cecelia. Rudledge, Carrie, twins. Patron Saint, ... give her Gerard. He's used to profanity."



Finally, He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." Exactly, "smiles God. "Could you give a handicapped child to a mother who does not know laughter? That would be cruel."



"But has she patience?" asks the angel.



"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."



"But, Lord, I don't think she even believes in you."



God smiles, "No matter. I can fix that. This one is perfect."



The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."



"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.



God smiles, "A mirror will suffice."



By Emma Bormbeck

Marilyn - posted on 07/26/2009

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Hello Jennifer, my name is Marilyn and my son Jaden (age 5 1/2) was diagnosed with severe autism spectrum disorder at the age of 2. First let me say that I am so sorry and I completely understand how you feel. You need to grieve and take some counseling. You have a rough road ahead of you and you're going to need all the strength you can get. My son Jaden was a normal baby. He was more than normal, he was sooo smart! I thought he was going to be a genius. When he was 5 months, I used to say "Jaden, who am I"? And he would say "My mama." By the time he was 11 months, he would say: mama, hi, and bye. He completed all of his milestones like a normal child. I started noticing something was wrong when he was 14 months old and he wasn't saying any new words. He wasn't saying ANY words for that matter. He would throw major tantrums (especially in the stores) and would act like he was in his own world. I was so devasted. Jaden started kindergarten last year (I live in Orlando). He goes to a public school and he's in an exceptional education (special-ed) class for kids with autism. He has 3 teachers and 7 classmates. The school offers him speech therapy and occupational therapy 3 times a week. Jaden still isn't potty trained :( But we're really working hard on that. Ever since Jaden has been in school, he has made a lot of progress. He throws less tantrums and now he is pointed to things and saying what they are.



Jaden is very affectionate when he wants to be. I noticed that one day he wants to hug me and kiss me and the next day he doesn't want me to hug him or kiss him. He alternates...lol People tell me that God chose women like us to be the mother of a child with special needs because we're special ourselves. That makes me feel better, but sometimes I feel angry. Why my son?



I grieved for a couple of years. I was so mad and bitter. I kept wondering "What did I do wrong"? But I've realized that it was nothing that we did wrong. I thank the lord for my son every day. His autism is a challenge that we will over-come together. Keep your head up mama!

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Shirley - posted on 11/14/2013

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Hi Jennifer, I hope you & your family are well. If your son is progressing well then I'm very glad to hear it. But if you are still waiting to see a difference & need help. There is a retired teacher who has made such a difference in Many lives of children w autism. She has developed her own prOgram from personal expeRience with her grandchild & is in the middle of starting her own school. You can check out her wEbsite:http://www.missinglinkmethod.com/ I have seen results wanted to share

Sophia - posted on 10/18/2012

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YES HE CAN GO TO SCHOOL..THEY DO HAVE DAYCARE FOR CHILDREN WITH SPECIAL NEEDS. AND THEY ARE VERY GOOD AT THESE SCHOOL. THEY WILL HELP YOU AND HIM. GOD BLESS.

Maria Theresa - posted on 08/11/2012

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You need to write to Dr Cindy Schneider..she had three children with Autism and was a obgyn doctor and changed to research tghe subject of Autism. She 'cured' her last child as she got him early so is a world expert in Autism...giving lectures all over Europe and people fly into her clinic fom all over America and further.
she can be found at the www center4autism .org a fantastic place that performs near miracles and also uses the hyperbarci chambers in some cases...she has free diet sheets and research papers that make great reading............God Bless you...............xxx

I am a happier person even with a phone call or a visit with the great caring staff there

Nichole - posted on 07/12/2011

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I have a 4 year old son with Autism, he was diagnosed at 2 yrs... we are currenty doing ABA therapy and Gluten free/casein free diet along with Hyperbaric oxygen therapy everyday. he is non-verbal but recently learned his alphabet and number 1-20. he hugs and kisses us nd is very affectionate. he feels love and knows we love him! he si amazing! he has taught us so much compassion and understanding and most of all patience. we are better people because of him. it is a daily struggle, but nothing we cant handle. your grief will pass. i too went through that and would cry constantly feeling empty and helpless. the thing is you have no idea what his future will bring. he may be a very well functioning independent child as he grows. he need so much love which is an easy thing for you to give him. my best advice is that even tho he may not talk doesnt mean he doesnt like to hear your voice. talk to him always, tell him what your doing, how you fell everything ,your his mom and your voice comforts him . you never know how much he may actually understand. there is soo much help for kids with Autism. its not a death sentence, eventually you will get over the sadness and you will feel proud and happy for him. every little thing he does or says will be like the first time he said "mama" for you. you get to have that feeling of joy and excitement everyday !!! not all parents get to relive that feeling over and over again! your are blessed God chose you for a reason to care for this special child of his, he has a purpose for him and you are the one he entrusted with him. If GOD brings you to it.. he will bring you through it!!! :)

Dianne - posted on 07/10/2011

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Jennifer, there IS hope. I vividly remember when my son was diagnosed (now 11). I remember the grief and anger. The years from age 2 to 6 were no fun. People used to ask me if Jordan was always so happy-then overnight he was frustrated or angry almost all the time. It's still hard to see how he struggles with social interaction, but he's mainstreamed in school and is very smart, very funny and his language skills have improved so much! I don't have visions of him living in a group home anymore.

My best advice is 1) read everything you can, starting with Overcoming Autism by Lynn Kern Koegel (PLEASE, PLEASE read this book!). Another good one is Temple Grandin's Thinking in Pictures. 2) Learn (if you don't already) to observe your son like a hawk. Try to get into his head and figure out his motivations. As "Overcoming Autism" will discuss, there is a reason for every behavior, whether or not it makes sense. Not necessarily a GOOD reason, but a reason. Teachers, family and friends will be asking you how to handle his behaviors and/or understand his thinking. You know him best, you'll have to speak for him until he can do it for himself. (And he will, with your help! :) ) 3) You're going to hear about "parallel talking", which is talking while you're doing things; say what you're doing, why you're doing it, give him a label for things. I still wish I was better at this; it's hard to get used to explaining things that most people never have to think about or explain to their kids. 4) Obviously, speech/language therapy, sensory interventions, etc.

Good luck!

[deleted account]

jennifer. The wait game is brutal. I have a 4 year old daughter with moderate autism and it took a year and a half of going through many agencies and referrals to get her diagnosed. I don't know the full details of you situation, but we finally went to reputable clinical psychologists in private practice that were recommended by Autism Society of Colorado. We were told that a diagnosis in our state had to be from two clinical psychologists who signed off on the diagnosis. We were in within a week and the testing took 4 sessions over 3 weeks. We found many specialists both at the hospitals and state agencies had worked with them prior to them going into private practice and found their report extremely thorough. I have never had a problem with other doctors or state agencies accepting the diagnosis. I wish you the best.

Melissa - posted on 08/10/2009

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Jennifer,

Have you seen a DAN doctor? My 5 yr old was diagnosed 2 and a half years ago. With all the vitamins & gluten/casein free diet, we have seen a big change. Lots of eye contact,hugs & kisses galore! He still doen't speak, but is very close! He says a few words, knows his colors & shapes. His comprehension of commands is where I see the most improvement. He starts kindergarten on Wednesday where he will have speech all day instead of 30 minutes a week...I am excited for him...me on the other hand....that's a different story! Hang in there!

Stephanie - posted on 08/09/2009

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i know this is hard on you and your whole family but you arent alone there are tons of familys going through the same thing i too was in your position 9 years ago but i had no clue as to what autism was and i too felt hopeless and alone in this.my son did as you have described it was like a light went off we lost words emotions tip toed everthing,but we read alot asked alot of ? andwe loved him he started school at 3 did not talk at all just grunted still walked on toes he was in diapers till me was 5 but know he is 10 does multiplucations reads out load and tells us all that he loves us everydayhe is very close to being a typical lol 10 yr old boy(even into girl)lol so hun dont worry sooo much about the future and do what you can know to make his future better and that is to educate your self and people around you about autism god put this on you because he knows you can handel it i will pray for you and your family

Lydiaj - posted on 08/04/2009

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dear sweet child, you have yet to realize the blessing in your midst. 30 years ago i was blessed to give birth to a beautiful baby boy. he was formally diagnosed at 2. fully tested at 5, was high functioning with horrible behavior and went through every school in los angeles unified school district with an autism program at that time. i was recently separated from my husband, (who in turn until his unfortunate early death at 40 became my best friend and co-partner in saving our son,) working a full time job, (I eventually had to give up), moved back home with my mom, (who at the time was not accepting of the diagnosis), was thrown into helping raise my sisters son (who was three weeks older than my son), .................and with all that overwhelmed with the fact that my baby had autism. what was I going to do?? i chose to help my son, no matter what. to tell my life story would take days, but you are seeking hope, I offer that to you today. my son was not expected to be able to do much by way of progressing positively in life. i was encouraged by the discouraging words of a little old lady who actually told me my son would probably grow up to be pretty much nothing, so i should just be happy he could do what he was doing and not expect much more. she inspired me to make her eat her words!!! now you need to know, at 18 months jamaal was reading and playing the piano. by the age of 5 he was memorizing statistical facts from baseball cards and anything to do with sports. he was playing the melody line of every commercial that would come on the television and we were all excited about what he could do, not recognizing the things he could not do. he had no comprehension of what he read but could read at college level. he was memorizing whole piano pieces but could not read sheet music.....(which we later taught him to do). jamaal had a bigger problem that prohibited him from progressing because of his autism. he would become aggressively uncontrollable and would lash out whenever anyone or anything disrupted his world or space. i recognize his symptoms are not your childs, but im offering hope. to fast forward this story 30 years, jamaal has become proficient at sports statistics. he is the local town hero and high school celebrity and has been blessed with the opportunity to do sports commentating for the local high school on the local cable television station. he also writes his own sports newsletters that are published weekly during sports seasons. he is also a musician at our home church and has become social by his own description with the facebook community at large. i offer you hope today because there were many days i cried all by myself because i did not think he would get through this. my victory came for him because i chose to not give up. i chose to give, all of me, in an effort to make sure that he could have the best life i could give him. hes a great guy and although he lives with me, which is just fine with me, he has a life because i chose to not give up. jennifer, cry if you must. i still have my moments and will probably until the day i die, but after your good cry girlfriend, dry your eyes, roll up your sleeves, and seek answers for your child wherever you can. your blessing is out there waiting for you to find it. I trust God for guidance and direction in all areas of my life and I challenge you to do the same. You can to the most for your baby by doing all you can to make sure you get all you can by way of help from dr.s, family and friends.

I pray God will lead you to what you need when you need it. dont give up dear girl, get busy..... your baby is counting on you!! you have already made the first step by asking for help by way of hope. hold you head high, never, ever, be ashamed of your baby. children are a blessing from God. love them and protect them with all you have and your reward will be great for the doing. you will get through this.

Alicia - posted on 08/03/2009

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Check with your school district. One of the mothers who replied to you said they wont give him services until he is three but it depends on where you live. Liam could recieved weekly in home services at one and started school four days a week at 2. Also if you start diets etc that's great but you should try one at a time otherwise you wont know which therapy is working.

Delia - posted on 08/01/2009

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I understand. My son Thomas was diagnosed at the age of 4. I kept asking the doctors if he was autistic or not. They just kept telling me he was slow, but I was not sure that was what was going on with him. I finally went to another group of doctors who finally diagnosed him - he had autism- high end of the spectrum. We did get a diagnosis at 2 1/2 that he had a speech delay and was developmentally delayed in other areas but they felt he would catch up. At 3 he was placed in a preschool program for developmentally delayed children. That program was a blessing. By the time he was ready to enter Kindergarten he was talking, could say his ABC, write the letters, sound out the letters, read basis words. He is entering 1st grade now and he amazes me. Be consistent and work hard with your child. It takes a lot of repetition with children with autism. My biggest concern with Thomas is socially. I worry that he will be picked on, and sometimes when there is too much going on he gets anxious. But above all, I know that God gave me a gift. He know I could handle it. Sure it gets hard. But all I have to do is to look at my sons face and I know it is well worth it. Remember you are his #1 advocate. fight for all the services you need. Never second guess yourself. I have found out that 9 times out of 10 I am correct about what is good for my son. Check with the health centers for classes, these are more so in college communities. Above all Thank God every day for your gift and ask for Wisdom to be the best mother you can be. Oh yes shower you child with love and one day he will give it back (hug, kisses or just I love you mom) and you will fall in love with your child all over again.
With love, Delia

Jennifer - posted on 08/01/2009

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Hi Jennifer, My name is Jennifer as well. We have 7 year old b/g twins. My son has very complex, multiple needs. At 2yrs diagnosed with OCD. At 4 diagnosed with Tourette's Syndrome + OCD/ADHD and now at 7 yrs diagnosed with Aspergers. I am a daughter, wife, mother, friend, educator with special needs background and am also working on becoming a Certified Canadian Parent Educator. Life is crazy at times and yet we work together and make it work. Everyones comments that I have read are all so helpful and inspiring. Life will have peaks and valleys over time but it's about the journey and the memories. It's what you make of it. Now that my kids are 7yrs, i look back over this 7yr roller coaster ride and realize that my son has a wonderful life. I worry about his day tomorrow and about his future. But i keep my sanity by living in today! Get a really good book, wait for the best doctors, expect the best for him in school and from your school board, join a support group, go out on a date with your partner, get in some "girls time" but most of all, enjoy him for who he is!

Tonia - posted on 08/01/2009

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My little boy is five. At least, if you get help, you're getting it early. I have been fighting for 3 years w/my little boy. Just got him diagnosed for real earlier this year. Now, a speech therapist comes to the house twice a week, he goes to a special program through the ISD that is offered. THey start as early as 3 years old.
Just keep talking to you son. Look him in the eye. Ask him questions, respond w/the answers. You need to keep conversation going. Autism isn't as bad as what it was years ago. When no one knew anything. I bought 3 books that Jenny McCarthy wrote. You need to get them. There is a fear of what happens if you find out he is autistic. But, with her books...it helped me realize there is hope. My little boy will start kindergarden this year. He cannot carry on a conversation yet. He is saying words though. One step at a time. Encouragement.
Every toy that I purchase is educational. Memory games, a little interactive laptop. Things that they will have to think about to use. When he was little and I noticed a change...I purchased the baby bumblebee series. THey are very educational. My little boy knows all of his colors, shapes, abc's & 123's now.
It takes work & patience.
My work w/my son was done backwords. We were diagnosed through the school psychartis, the dietician, etc. Then we went through the peditrician, speech therapist now. And, now we have to get the appointments w/the neuro dr. & whatever other step we need to take. He gets music therapy, occupational therapy, & speech therapy w/the school. Now a therapist comes to the home twice a week.
Also, after reading McCarthys books, I am going to check into this gluten free/dairy free diet thing. And, the B12 shots. She said all of that helped her child.
When you noticed a change in your son...was it a little while after he had recieved a set of shots? McCarthy believes some of it is caused by vaccinations.
Don't feel like you have lost your son. You are his world, his connection to what windows will open for him. I am not a big religous person, but, you have to have faith. The more you work w/him, start routines now. Watching baby bumblebee, flash cards, anything you can get your hands on.
My little boy hasn't said moma yet. That is heartbreaking for me. I just want to him talk, I want to hear moma come out of his mouth so bad. But, in time. My little boy is very loveable. He hugs, he kisses, he will rub my face. Very loveable.
He does go to school. He is working on the social interaction part at school. Sharing, doing activities w/other kids.
Don't give up. Don't freak out on him on either. You need to be his support, his backbone from here on out. A
Oh, also, have them check his hearing. I have argued for 2 years something was wrong w/my little boys hearing. Finally, the did what is called an abr....he only had 30% hearing. Everything that he heard they said sounded as though it was under water.
So, we're seeing a change there also.
Educate yourself, I don't get just dr books. Like w/McCarthys...it is from someone who has dealt w/it & knows what we go through as mothers.
You will get scared, you will cry reading her books.
But, they are so worth it.
Sorry, to have written such a long response. But, I remember what it was like in the beginning.

Katherine - posted on 08/01/2009

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Yes they are mainstreamed and I have done research and ABA. Get him to someone who does this (ABA) Right away!!! It will improve soooo much!!! I'm so sorry this happened, I really hope they find the cause or cure!! By the way Applied Behavior Analysis. There is also a website called Jack's Place with other mom's who have children with autism. There are a lot of mom's out there just like you!!!!! Get online to find a Behavioral Psychologist and I will contact my sources to get you more help!!

Michelle - posted on 08/01/2009

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My son has asperger's and is no way near as severe as your son. I still remember the time of grieving as I realized that my son was not going to be doing the things I had planned --- play sports, run with friends, grow to be a strong adult with a family and children. In a way...you are grieving for the son you knew but you need to be there for the son(s) you have. Take it one step at a time and don't forget your other son is confused and hurt as well. He needs you during this time. My only wish for my son now is that he is happy and content. The things that would bother me --- the few or total lack of friends may not bother him at all. Remember that his needs are not the same as your. Above all - continue to love him.

Maggie - posted on 08/01/2009

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Jennifer, I just want to give you some words of hope... My son has Asperger's Syndromw (high functioning autism) We knew from a young age "something" was different but he wasn't diagnosed until he was six. You're lucky to get a diagnosis earlier as then you can work towards helping William out. My son is now going on 14 and he's in a regular classroom with friends and everything... I never thought he would ever have become a productive member of society but please remember there is always hope... My son has become a loving and affectionate person (although he still doesn't like making eye contact.) Only time will tell but hold on to the hope that today's behavior doesn't dictate tomorrow's.

Deana - posted on 08/01/2009

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HI Jennifer,

I have a 3.5 yr. old son now about the same time if not earlier then your son i started notice the same things your son is doing my son lost a lot of his milestones he did have like babbling ,peek a boo, etc. then all of sudden nothing everything was gone and he was stimming and running repetitive, mouthing everything,rocking,not playing,spinning,tippee toe walking etc..and no words or communication at all no pointing looking nothing then we got him hooked up with early intervention and they tested him and found red flag like i did for autism and developmentally delayed he was so we started service bout 1.5 this all started and then i asked for a psychologist to test him for the autism testing and they did and sure enough it came back my son has what is called autistic disorder which is no social or communication part of his life with other stuff also..as of now he has had his 2nd diagnosis and testing and it stayed the same but we did just bout 2 yrs. of ei and he still was not talking his vocabulary was maybe 5 words he knew when we finished with ei do to he turned 3 and the school dist. takes over now he is in school and he talks and is starting to say sentences which i cried and worried for ever and ever he would never talk or communicate with us beside signing to us which we taught him so we could have some communication level..it all come in time as soon as they started helping him out with speech and other services it just takes lot of work and time but will come soon enough. i felt empty to when i first went thru all this i thought it was me i blamed myself thought i was not a good mom for not doing flash cards and stuff like that with him but it was just he was not into any of that so i thought cuz i said well he not interested in that stuff i will stop then when i did i blamed me for him not talking and being behind but all naturalization it was nothing i was doing he just had autism which runs in my family but believe me it will all come in time and i mean in time my lil guy used to be stuck to me when he was little now we just have to wait for him to hug and cuddle us and kiss us it has to be on his time and he will when he wants to be hugged or kiss he will come up to us and say hug,kisses and then do it but if you do it to him and he don't want his space invaded he will not respond to you he will push you away and say no believe me i have my mother- in-law who is in major denial bout all of this who has pushed my son and still does into him kissing her or hugging her and now he will not go near her or anything when she approaches him to force him to kiss or hug her he hit s her away and i know it sounds mean but i let him cuz she needs to respect his needs and requests..but there is so much more i have so if you like to talk we can i will be more then happy to just write me...best of luck to and your family and make sure you educate yourself more cuz i did and it helped a lot more..

Teri - posted on 08/01/2009

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Hi Jennifer. My son was diagnosed with high functioning autism and ad/hd at the age of 6. I have felt all the feelings that you are now. What did I do wrong? Why is this happening to us? Could I have done anything to prevent it? The answer is NO. You have done nothing wrong, you did nothing wrong and there wasnt anything you could have done to prevent it.



The Erma Bombeck poem that Amber posted is pasted to my refrigerator. Every time I get feeling like me are taking more steps backward than we are forward I read it...and know that there is a reason for what is going on.



You CAN get throught this...because you have to get through this. I didnt see where you are from in your original post but there are resources out there that can help you accept and adjust. Autism support groups help tremendously.



When my son was diagnosed, it was after he got into kindergarten. The pricipal would call me and could hear a child screaming and crying in the background. He was overstimulated and had no other outlet then to throw a temper tantrum. After the diagnosis, we put him on Ritalin (which I didnt want to do) and it helped but the side effects were sleeplessness and loss of all appetite. So I changed him to Concerta. He is now going into the 3rd grade..He reads at a 6th grade level, he can do complex math problems in his head (which gets him into trouble at school cuz they want to see the work). He gets speech therapy and occupational therapy twice a week. He can now use his words to tell you what he is feeling and can answer the W questions. 2 years ago he couldnt.



There is hope and there is help out there. It is a long road, filled with more backwards than forwards. It seems you get 2 steps forward and then something happens and you go 5 steps back. Patience, perserverance and the love for your child will make you do ANYTHING to help him. Just remember...God will not put anything in front of you that HE will not help you through.



Now, this may sound very harsh and you may think that you cannot do it. You need to take care of YOU. As hard as it will be for you, you need to go get your hair or nails done. Take a couple hours and go shopping. Have a trusted family member take your kids for awhile and take a hot bubble bath. You will need the time to yourself so that you can continue on this journey. You will be surprised at how recharged you will feel will with just a couple of hours to yourself a week. If you dont, you will go absolutely crazy.



Educate yourself. There are alot of books out there that can help. My favorite is by Temple Grandin "Thinking in Pictures: My life with autism." Some of the most brilliant people in art, music and literature were autistic. Albert Einstien, Bach, Mozart and Emily Dickinson to name a few.



I wish you all good luck and my prayers are with you and your family.

Dayna - posted on 07/31/2009

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Well Jennifer you need to educate yourself for sure as one other mom said. The autism spectrum is very wide. Early intervention is key. My son was 4 1/2 before he said his first word. The first time I heard him speak was in his intense behavior intervention class. The teachers called me to class to speak to me and he named everyone of the families members in our home... I lost it and cried like a baby. I never thought I would hear him speak. Today he is 11 and in a special ed class at a middle school and he is thriving.. He can speak very short sentences and now adds and subtracts.. Anything is possible.
One thing you must remember is that if he is diagnosed with autism you NEED to educate yourself and see what programs are in your area to help. Most of all don't let this run your life. It is hard for any parent. I have come to accept that all I can do is accept what is and work to give him the best quality of life possible. I still have my days were I ask God why him why me why us as a family.. Also remember your other son. This will be hard for him as well. Try to remember that he is still there and needs his mom. Look into the Autism support groups in your area...
Good luck and God Bless the road ahead can be weary but with support of family and friends I am sure you will make it through. I hope some of this helps. We will pray for you all.

Audrey - posted on 07/31/2009

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Jennifer, I am so sorry for the loss and grief you are experiencing. I am an older parent (43 years old) with 2 boys aged 13 and 15 years old and a 2 1/2 year old daughter. Both of my sons are Autistic. They were both early births and low birth weights. We have been in your situation of grief and anxiety for all of their lives (15 years now) and we never stop grieving. There are many wonderful things that have come from our family, though. You will see in slow motion every wonderful development and skill he develops and feel as much glee and happiness as he does when he does them. My husband and I are making plans that our home will be deeded to an actual company that does group home management so my sons will ALWAYS have the care and housing they require. There are lawyers that specialize in developing wills and special provisions for families with special needs. Also, when your son is diagnosed, immediately request SSI to be initiated (this is subsidizing income AND (in Pennsylvania) usually guarantee of medical care for life. While the boys live with us, their SSI is based on our wages, but when they become adults we will make changes of their care and needs. But we are taking our time and being thorough with our information. I am so sorry that you have such a tragic rapid change in your life, but it isn't all bad and there are wonderful things to come, I assure you. Email me at home, if you like: My name is Audrey and my email is sherasi@ptd.net.

Liz - posted on 07/31/2009

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Although I myself am not a parent of an autistic child, I have worked with Autistic children. I would like to reassure you that there are many many many people out there that are feeling and going through the same type of situation. The good news as that you are doing the right thing by getting him in early to people who know good techniques to give your son a better life. Although he will never not be Autistic (if that is in fact his diagnosis), many Autistic people learn a lot of skills that can help them. I agree with the post below me...educate yourself extensively on the subject, work with his doctor and REACH OUT in your community to others in your position. Autistic kids were the highlight of my job working with developmentally disabled people...they do have personalities, just highly unique ones. Your post almost made me cry, that you should feel so isolated. You are doing the right thing, keep up the good work, and once you come through the grief, you may find it's not as disasterous as it seemed at first! Peace and love to you.

[deleted account]

Jennifer, I do not have a child with Autism, but I am a speech-language pathologist who has worked with several children who have autism over the years. I know how devastating this can be, but educating yourself is very important. The book "The Out of Sync Child" is excellent. There also should be an Autism Support Group in your area where you can get in touch with other families who are going through the same things. The waiting game is nerve-racking and I recommend calling the company again and again until they return your call. Your son is important and you are his advocate. Early intervention is so important so keep on pushing. Many children with autism do learn to communicate verbally and they do show affection in their own ways. Some children with autism use pictures to communicate at first and then we find that the pictures help facilitate the verbal communication. It is called the Picture Exchange Communication System (PECS). Don't give up hope and don't for a minute think this is your fault. Obviously you are a wonderful mother because you are so in tune with your child. My thoughts are with you! -Kim

Tracy - posted on 07/31/2009

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Jennifer I do know how you feel. I am sorry you feel so alone, I do to a lot. As a side note the gluten free diet does help when it comes to behaivior issues and is all together healthier for the rest of your family too! Also just because he has autism that doesnt mean he will have to be in a group home or be dependent apon people the rest of his life. Its quite the opposite actually. People with autism are very self aware and can take care of themselves. I went to college with a guy with autism, he graduated and he lived on his own. Its not going to be just hard for you it is going to be very hard for him too.
My son was put on the autism spectrum disorder 2 yrs ago when his behaivior got out of hand. He seemed like a normal child except way more independent, like crawling at 4 1/2 months, walking at 9 months, potty training himself at 1yr 2 mths but there were early signs. Like him having no interest in others, not talking, crying, cooing. Stacking blocks for hours. But there is good news. Autism isnt a horrible thing its just a communication barrier. I got him into pre headstart that way i could sit threw the play time with him and other mothers with their children. Bringing him to a scheduled class with the same children almost everythime prooved to be a help and showed progress. Progress takes a long time and I felt set back and alone and felt like giving up all hope many times. If I can give you any hope now I will. My son is now 4yrs old and enjoys giving me and daddy hugs. He loves playing along side other children but doesnt usually play with them. He goes to a school with other children with disabilities, not just autism, and does well there. And is now talking in 3 word sentences, which may not seem like a lot but it is to me! All of this takes time, a lot of effort, and as much understanding as you can get from anyone around you and even give yourself, which isnt always easy. I pray for the best for you and your family Jen. Every step in life is a mile stone, a lesson learned. You are someone special, you and your family. Everything takes patients and time! I hope I gave you some encouragement. There are so many things you can do to help now that you know. Cut in early and make a difference the sooner the better, and by getting those tests done you are well on your way to getting the help ou need! You are doing what you can for now so remember that, you can only do so much. Look up things online, read books, grab every bit of inforation you can because it will all help. You arent the only 1 remeber that so you are not alone!

Amber - posted on 07/30/2009

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Don't give up... We are all in this togeher. You are not alone. I found this just after my son was diagnosed about 2 months ago...



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visulaize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew."

"Forest, Marjorie, daughter. Patron saint Cecilia."

"Ruthledge, Carrie, twins. Patron saint...give her Gerald. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she wil handle it."

"I watched her today. She has the sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm giving her has his own world. She has to make it live in her world and that is not going to be easy."

"But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

"The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child that is less than perfect. She doesn't realize it yet, but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says mamma for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see--ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be there at her side every minute, everyday of her life because she is doing my work as surely she is here by my side."

"And what about her patron saint?" asks the angel.

God smiles. "A mirror will suffice."



by Erma Bombeck

Naomi - posted on 07/30/2009

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Jennifer, First I want to say I know what you are going threw as I went threw the same thing when my son turned 15 months. You are not alone and your son will come back to you. Offer him allot of affection make him look at you and make him request things from you. Get into his world by doing as he dose sit on the floor with him and talk to him. You are on the right track with the food thing. My son came around 3 months into the GFCF diet. Find a DAN dr in your area. My son loves to play with me now he still has not regained his speech but he knows some sign and he request things with photos. He loves his sister and he expresses himself well. Where do you live maybe I can help you to find a DAN dr in your area i would be happy to talk to you on the phone if you need a helping hand or a shoulder to cry on. It is all so hard and overwhelming but in the end he is your son and you love him more than anything!!! You can e mail me twohappychildren@msn.com with questions!!! Naomi

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Give him lots and lots of attention and affection, one on one training. Get in into an autistic program asap. You are feeling exactly what every parent with a disabled child feels, you are NOT alone. My daughter is 28 has Rett Syndrome, autistic like syndrome on the very worst end of the spectrum and can't be helped like many autistic children can now but don't give up hope there is so much that can be done to help an autistic child. God Bless you

Mistie - posted on 07/30/2009

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I do not know where you live but here in TX we offer an Early Intervention Program that will service your child until the school picks them up at three. I would suggest going to your scholl district and asking for the special education department. they should be able to get you in contact with who you need to be so that you child may start receiving services immediately. the sooner the better, here in texas as long as your child qualifies as the services are free.

Stacey - posted on 07/30/2009

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Hi Jennifer,

Me again, just thought I'd let you know that I am looking into the Gluten-free, Casein-free diet. There is a lot of scepticism and it doesn't work for everybody, but there are so many success stories that I decided I cant 'not' give it a try. Something else for you to think about or look into. I am also looking into Vitamin supplements, detox of metals, and using anti-fungals to kill Candida. I dont know much about them, theres a lot of information to go through, but they are some things you could look into.

[deleted account]

Oooh, Jennifer!!! Guess what I just found.. a whole 81-page guide to preparing for your journey, organizing yourself, etc. By far the best I have ever seen.. it was meant to be!

Check out this link: http://www.autismspeaks.org/docs/family_...

or you can wait, you can fill out the online application and they can mail it to you..

Good Luck!! Hope this helps! :)

[deleted account]

Oh, and please, MAKE time for your other boy! Even, if it's 20 minutes a day! Allow him to initiate play and follow his lead.

[deleted account]

Jennifer, while you wait.. start preparing. Put together a binder dedicated just for William that includes all relevant information related to your child, like:



• Dates of immunizations, hospitalizations, illness, surgeries

• Contact info and dates of service for: doctors, specialists, dentists, surgeons,

• therapists, insurance companies, schools

• Phone conversations logs for: medical professionals, insurance providers

• Medications

• Insurance information (copy of policy and correspondence)

• Education/School documents (i.e. 504 Plan, notes from nurse, etc.)

• Equipment, supplies and vendor information

• Emergency contact information

• Other information specific to your child



Start with today. Don’t let the overwhelming thought of organizing prevent you from beginning. Find a method that works for you and use it. The best method is one that you will use regularly. Organizing and educating yourself is the best thing to do until William begins getting his therapy. Once therapy begins, it is of utmost importance for you to collaborate with everyone involved. Talk with the teachers on a daily basis about your child's eating habits, behavior, activities, learning of new skills, friends, or other "happenings" in your child’s day. Actually.. part of his notebook should include a section where you start an "ABC" Chart.. this used to help figure out why a behavior keeps occuring. What was the behavior? (Flapping Hands) What was he doing before he started flapping? How did you react to it? How did he react to you? When does he start to walk on his toes? When he's excited or frustrated? Good idea to start taking down notes now so you are better prepared for all the upcoming meetings.



Now, getting back to the importance of collaboration.. You must develop good two-way communication about your goals for your child, your childrearing practices, and family preferences in order to minimize conflicts and confusion for your child. If you are troubled by something that may have occurred during a session or at school, discuss it with your child’s teacher at an appropriate time and setting. Open, respectful communication often clarifies a situation before it becomes a problem. View themself as a promoter of quality child care. If you feel the quality has changed, or is being compromised, talk with the provider or center director. Strengthen the bond between your child and his teacher by helping to establish an attitude of trust. Mention the teacher's name in conversation at home, and show interest in your child’s interactions with her/him. Let your child's teachers know you appreciate their efforts. Always sit in on sessions so you can learn carry-over activities and techniques. Ask, ask, ask.. therapists are filled with all kinds of resources, referrals, latest info, etc. Don't be afraid to ask.



I had a Special Needs Child too and that is what led me to go back to school and change careers! Today, he is a typically developing child and I am a VERY happy Special Instructor! Best Wishes!

Laura - posted on 07/30/2009

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Jennifer,
Contact your Regional Center to get him early intervention services. They won't be easy to get and they may deny you services, but don't give up. Keep calling and leaving messages until they get back to you. He is too little to go through the District, but once he turns three than you'll be able to get him services through your school district.
Jennifer, autism is a life long "diagnosis". The best thing you can do right now is to calm down, get educated and find a support group in your area. You need to know who, in your area, are the best service providers, pediatricians, neurologists, etc. Find the best school districts or those who are more sensitive to autistic children's needs. Find family and friends who will watch your babies while you take some time to yourself. This is a long process, so you need to be prepared emotionally and physically. Autism is not well known and you will find physicians or professionals who don't know much about it and will try to convince you there isn't much to worry about: don't believe them. The sooner you establish services for your son the better. When it comes to diets, I put my daughter on a non dairy diet and worked wonders. Casein free seemed more challenging for our lifestyle, so I decided to keep my sanity and to not mess with it. That brings me to my next point, life goes on. It is very important that you do your best to have a normal life. Love your son, kiss him, hug him and more importantly treat him like the beautiful human being he is. Don't see autism in him see his potential. I can assure you he will do much better than you think. My daughter behaved exactly as you describe. I remember crying for weeks when she was diagnosed wondering if she would be able to have a normal life. You know what? She does. She talks, jumps, runs, sings, has friends, rides a bike and even tells jokes. Love your life with autism in it and be thankful for the wonderful family God has blessed you with. Best of luck!

Lisa - posted on 07/29/2009

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My son was paralysed at 18 months after a battery of shots, he was hospilitzed for quite some time, after the ordeal and intense IVG treatments he developed autism and aspergers syndrome and did all the things your son is doing.

His twin Sister Gia had no adverse reactions.

Through the GREAT power of God, my son regained the ability to walk, then run, then

talk again, I got early intervention, speech therapy, occupational therapy and Physical therapy. Today he is doing GREAT, even going to regular school NOW! Is reading abit, He is now 8! So pray, pray, get him all the help he needs and LOVE, HE will get better!

All the best to you,

Lisa

615-672-6822

Kitty - posted on 07/29/2009

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Jennifer your post broke my heart because I remember saying those exact words to myself 7 years ago. There is hope. It will get better and you will hear your sons voice. It may not be the way the others do, but he will find it, with your help.



My daughter Savannah didn't talk, she screamed. She banged her head. she locked herself in closets, she refused to be touched or hugged. It is heartbreaking. But it can get better.



First get him into some early intervention program through the school. there at the district they have classes for you to take that will help you to learn how to teach him and find that world that he is now in.



In the meantime, love him. Sing to him, that helped my daughter. If you ever need to talk, you can contact me anytime.

Jamika - posted on 07/29/2009

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Hi, Jennifer,
I am not going to start this with I'm sorry because there is nothing to be sorry about. I want you to know that the gift u have been giving is going to be a tough road. Let me go back, I have 2 autistic child (Robert is 9 and Ashaya is 7), but I am just going to talk about my daughter. When she was about 6 months, I noticed the normal signs like: rocking (she would do it all day long), head banging(now I will pray you do not cross this one because this is what made me go to the doctors in the first place), no words, loved putting objects in her mouth. I went through all the things you did, I even went to an ear, nose, n eye doctor because she stop responding to commands and her name. I put her on the gluten diet, I set up an appt. at the allergiest. I did all the things to rule out autism, but the answers were all the same. No, she did not have any kind of induced autism. I next made an appt. with a Psychiatrist to evaluated her with PDD(Persuaive Development Disorder), he recommended that I have her farther looked at by DEC (Department of Expectional Children), and to take her to TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren) this place made me cry because out of all the doctors and opinions I received; there were the only one that could ease my mind. I walked out the doors knowing, Yes...my child is Autistic, but it is going to be alright... Yes, it took a toll on my marriage at first; however, things are much better now. TEEACH wrote me a book on the next few years, and no it was not a real book, but with all the pages it really felt like it. I cried going home for fear, that I was not capable of doing this, I was only 26. So, listen...do your research, for when you do talk to these doctors you understand them and they understand you. Keep a list of all the things your son does, and record him if you can. Remember, only people that really do not understand what autism is say sorry, so do not worry...it is our job to educate them. God, gave you this gift because you can handle it, you can take care of your son, and he may not become what you wanted him to be, but he will be the best at something and that is all that really matters. Get him into a speech class at home, then work your way to a special education school, if it is not autism they can help...My daughter learned everything there in 3 yrs. and is now mainstreamed and going to the second grade...You can write me any time!!!

Becka - posted on 07/29/2009

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Jennifer I have a friend whos son is 2 and he has the same issues, to make things work faster for you, find a local agency that deals with children with behavior issues and autism, they can help move things along faster, My son is 9 and gets along well with him, Noah has aspergers, her son is non verbal autism and they play well together however Ian does not get along with children his own age he prefers older children to play with.

Becky - posted on 07/29/2009

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Hi Jennifer,

My son doesn't have autisim but he does have genetic problems that are being tested at the moment. I just wanted to let you know you are not alone. As I read your piece I could relate exactly to how you feel. Because my son hasn't got some of the devastating things the doctors thought he would be born with, friends and family just think I should be grateful. I am grateful but as his mother, I am also devastated that he still has some problems and we don't even know what they mean. His latest test has been sent to Italy and will take 3 months to complete!! I have desperate days when I just feel so sad that I just start to cry. I know I will feel better if we get a diagnosis as then I can concentrate on finding out about that one thing rather than speculating all the time. It is very easy to focus on the bad points of a syndrome too. My main concern was that my son might have a life-limiting syndrome. The waiting is a real nightmare. Sorry if this was abit depressing I guess I just wanted you to know the way you're feeling is absolutely normal. Good Luck with your sons diagnosis and hope you can then find more support.

KAREN - posted on 07/29/2009

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There are many of us. Who have gone through exactly what you are now. You will actually know whats best for your child. I have a ten yr old son who is autistic. He talks a little, he just started to answer our questions. He will tell us what he wants and even what movies he would like to see. Many hours of ABA. Whole bunch of patience (not always there) and good friends. Dopn't forget to give yourself some down time to energize yourself. Go to your school to find other parents with Autistic children then you can get together to talk about what you have done or suggest what to do. He is very young so has a good chance to do more with his life. start early (now) and the further it will help him. You would be surprised by how much they know with out looking like they are interested. They learn differently than other children but they do learn. Good Luck my e-mail edward.hiney@sbcglobal.net write any time to talk or ask questions. But the biggest thing is learn about ABA (applied behavoir analysis) start that now. never to young start with counting abc. Also you pictures cards for things he wants and EVERY time he points to one say "I want ______". Soon he will pick-up after the thousanth time or what seems like it. But you need to give him the words. You also need to make hime tell you not just point at something he wants. This help make the connection between I pontand get what I want and I have to tell someone I need or want something.

Stacey - posted on 07/28/2009

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I am in a similar situation, awaiting a diagnoses, however my son has been seeing a speech pathologist for a few months now. We didn't notice a dramatic change to our Son, so I sympathise with you if you feel like you are going backwards and losing him into himself. My Sons symptoms are a lot more subtle. At the moment, I am looking more into some of the diets, vitamin supplements etc. I have also just ordered 2 books written by Jenny McCarthy, whose Son has Autism. I think the best thing we can do is educate ourselves as much as possible, there is a lot of information on the net. There are also a lot of Autism toys/DVDs/flashcards etc that you can purchase online that claim to help with speech. Check out an online store called babybumblebee, they have Autism DVDs. But, like I said, try to educate yourself and research as much as you can, without sending yourself insane. Good Luck.

Darlene - posted on 07/28/2009

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Hello, Jennifer. My son is 15 and has been diagnosed with Asperger's Syndrome. I don't have answers to the symptoms you describe but I heard what you said you needed - hope. I don't your personal beliefs and I don't want to offend you but the best I can offer you is Romans 15:13 "Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit". Let that fill your heart and your mind. For you son claim Jeremiah 29:11 "For I know the thoughts I think toward you says the Lord, thoughts of peace and not of evil to give you a future and a hope". Whatever happens stand on that and speak it over him. Know that God has a plan for his life and then BELIEVE IN that plan. I'm here if you want to talk more.

Jody - posted on 07/28/2009

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Hi Jennifer. I know just how you feel. My Billy didn't regress like your William, he just didn't progress but at 16 months his description would have matched yours above. We put him in private speech therapy & found a Floortime therapist who worked with Billy & taught me how to work with him. I read everything I could get my hands on! That's your best tool. Educate yourself and follow your instincts. I feel that the Floortime, which is play based & helps to develop interaction really brought Billy into the world. The progress is slow but steady and he is the most affectionate, loving kid now. He tells us "I love you" spontaneously. He says "give me a kiss" and hugs us. He cuddles and plays and is the light of my life. He also hits his little brother & tells him to go away like expected from a big brother! There are many challenges & some days are really hard but he is happy and bright; he loves and is loved. He is currently enrolled in a year round school program for children with autism & receives Sensory Integration therapy. He speaks using full sentences. (at 3 he didnt say a single word. Just sqealed or cried. He's 6 now). Is learning how to read, spell & just started addition in school. Both of the books below posted by Carisa are favorites of mine as well. I'm currently reading Jenny McCarthys new book Treating and Preventing Autism and My Life In Pictures by Temple Grandin is next on my list. Temple has a PhD and has autism. Other moms recommended this to me. They said it gives you a new insight into your child's mind. Feel free to email me anytime. I'll answer any questions I can or just listen... Hang in there. There is a light at the end of the tunnel. Bless you & your boys! Jody

Marion - posted on 07/28/2009

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Hello Jennifer, I am crying for you. I have not been through what you are going through but I know it is grief filled when you know your child has lost something and he is too small to know. But you are his loving mum and I hope you find Gods strength for caring for your child and know we are all Gods children, none are perfect, but we each have battles and some slower than others to get through them. You are the best person for him because God gave him to you but sometimes we don't know Gods mind. I hope you can be patient with your child and trust in God.

Valeria - posted on 07/28/2009

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Hi Jennifer!

We know that it is very hard , but be positive! You need to be strong because he is going to need your help. Think that if he has the right diagnose in the early age, he can be recovered fast. My son is five, and we started the treatments when he was 3yrs & 4 months. Now, he is speaking , very social and he is going to the Kindergarten in the fall. We are very proud of him!! Hold in there!

Take care!

Valeria

Cathy - posted on 07/27/2009

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Jennifer, I have felt the same feelings you are feeling now. I have b/g twins who are 8 years old now. We were always worried about my daughter. We saw many delays but thought it was because she was a preemie. My son had delays too but he loved people so much, we didn't worry about him as much. Turned out they both have autism. We started out with Early Childhood Intervention then went to the preschool program. We also did private speech therapy and private OT even though the school provided it also. Fast forward to today. They are both going into 3rd grade, both mainstreamed into regular classes. My son is pulled out for resource for reading, writing and math. My daughter is teaching herself to talk in several different languages and her obsession right now is world geography. They both have their strenghts and weaknesses. My daughter is doing awesome in school but it's so hard for her to make friends, start conversations, etc. My son has a harder time with academics but is the most social kid. He walks into school, greets everyone by their name and just loves people in general. His gift is his memory. We think he has a photographic memory. We can go to a restaurant and the waiter will introduce himself. Six months can go by and we can go back to that restaurant and my son will walk in and greet our waiter by name. It's kind of freaky but also neat. I wish I could remember people's names. My response to you is...your baby is so young and he's too young for you to know what the future will hold. I thought about my kids going to a mental home and all that, just like you are. Getting your son help, is the best thing you can do for him. You have no idea what he will be good at. Things will get better. You will rejoice any little thing he does. It will get easier and it's so normal for you to grieve right now. One of my good friends has an autistic child and his IQ is that of a genius! He plays classical piano and he's only 7! Now he does have his quirks but it just goes to show that you just never know. He had his parents scared to death when he was a baby. He goes to school and teaches his teacher new words. She has to look them up in a dictionary. lol! A little piece of advice a developmental pediatrician gave me, really made me think. She could tell I was so overwhelmed and very depressed. She said "you need to enjoy your kids. You're spending a lot of time worrying and when your kids are older, you will regret not enjoying them more". From then on..I basically had them in therapy but I made sure they did normal kid stuff. We went to parks, swimming pools, parties, etc and I had fun with my kids. It's a lot of hard work, I won't lie but you will meet some amazing moms during this journey. I've met some of my dearest friends at speech therapy or places for special needs kids. We leave the kids with dad and we go out, just us girls to vent, laugh, cry. You will slowly build a support system. As you dig into research you will find so many places offer things for special needs kids. My kids both play baseball for the miracle league which is a league made up of kids with autism, down syndrome, physical disabilities, and other mental disabilities. I just found a roller skating rink that offers private skating lessons for kids with special needs. I'm taking my kids next week! You will one day look back and remember all the worries you went through. Then you will look at your "perfect" child and think this is how it is supposed to be. God gave you a special child because He knew you'd make a wonderful mom to a special child. Sometimes I pray "okay God, I know you think I can do this so I'm trying to be strong" because I definitely have my bad days. But, I wouldn't trade my kids for anything. It will be okay, I promise!

Jo - posted on 07/27/2009

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hi jennifer

my son was diagnosed with Aspergers when he was 3, we found the early intervention is a must, he did three years of comprehensive theropies, speech and o.t. and loads of
therapy homework at home, he is now nine, he goes to mainstream school and on his good days he is fine, (and yes we have lots of hugs) we still have lots of bad days, but we just take everyday as it comes.

The most important thing i would recommend is to try to read everything, and if you have a doctors appt, write all your concerns and questions before you leave home, because if you are like me you spend the whole visit in tears and ask nothing, this way you can just give the doctor the list and he can go through it. You will survive this, just think of it as a new chapter in your family's book,

take care
jo

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