My name is Danielle and I am a mom of twins one in which has a developmental and physical delay that is not diagnosed. We have been to soooo many doctors and I have done everything in my power to find the problem but have been unsuccesful! He has been in early intervention since 3months old and and I am TIRED! Is there any hope or any light at the end of the tunnel? Can a 17month old child who does not walk,or stand for that matter, does not speak but makes sounds and has eating and sensory issues...Can it turn around? All the doctors say is that he does not have autism and I know that he is in there somewhere he smiles,laughs, and is just delicious but is there any hope for us? I would love some feedback!

Danielle - posted on 01/30/2009

I will never give up but sometimes wonder why!!!!!

Michelle - posted on 01/29/2009

Quoting Danielle:

oH MY I AM SO OVERWHELMED BY THE HELP!! I just want to let everyone know that i will never give up I do have a developmental ped and an eye,ear,neuro,ot,pt,eating therapist and the list goes on and on. My son I think has a major motor planning issue as well as slight dyspraxia I have not vaccinnated him for quite some time but he was born with these issues i knew it the minute he came home. It is funny because I am a teacher my husband, mom, and mother in law are all in special needs but that makes it soooo much harder and having a twin that is totally and maybe beyond fine makes it worse. i am having terrible days because no matter how much people say that I iwll look back and say thank god i did this I am just not convinced. I am a young mom and just feel so jipped sometimes because by now I feel i would have been thinking about having another and yet i am bogged down. DONT GET ME WRONG ...Aiden is my life i love him but deep down inside I feel that I am missing something and that I can help him!

Danielle,

I feel your discouragement. You are doing everything you can for Aiden. I have read your list of medical experts, and see that he is surrounded by loving family members who understand him. The fact your support system understands your childs needs is in itself a plus. God has blessed you with this child and gave him to you for a reason-through him all things are possible.

Early intervention is the key for all our children with special needs. You see children with all types of needs benefit from similiar interventions. So chances are, you got him covered! Plus he has a twin sibling to watch and learn from. I can't see any situation that would be any better...as far as having another child, keep up the work it will pay off. We felt comfortable with his progress around age 8 and decided to have another. We didn't start are "early" intervention until we received a diagnosis at age 5. 

Another thought to keep in mind, with the early intervention, you could quite possible provide him with the tools he needs to adapt to an area that might be a major "symptom" in a diagnosis, making it even harder to see, so trust your mothering instincts.

Best wishes

Cynthia - posted on 01/29/2009

Hey there Danielle!

I read your post and I wanted to share a lil about one of my boys.I have a 3 year old who has sensory issues. Since very young ,and it sounds to me like your little one has the same caracteristics.I on the other hand have not let them diagnose him with autism .You do know that certain autistic kids or autistic spectrums are diferent.My kids laugh and play and are very affectionate my 10 year old was diagnosed with autism and he has come a long way, there is hope evevry child , and every child is diferent and they all develop deferently.It is tiredsome but we as mothers have to do everything in our hands to get them to therapies and when in school get them into a good program that meets there needs.My 3 year old strated to walk at around 18 months and we're working very hard on his feeding.When my lil one presented the problems he has I was really concerned because I already had a child with autism.And at the begining I was in denial it has been very dificult for us but we have managed to pull threw .You know they say God gives special kids to special parents.We love our children very much and it 's a constente struggle to get them into therapy but we have to do it.I wish you the best

Rebekah - posted on 01/29/2009

hi there danielle, iv been read wot u said bout ur storie and yes iv been there to and nobody would listen to me my husband ether ,,,, the way i did it was i did alot of hours reseach on the internet till i thou thats wot my sons and us are going throu... then i rang the national autistic sorcity up the give me lots of helpfull adise .... hang on in there , i did and now my sons talking and in a mainsteam skool and doing really well and so will urs to im sure,, keep on going gal becky x

Suzanne - posted on 01/28/2009

Danielle,

I know it's hard, not knowing, and fighting, and having people believing that we're not overeacting... that we KNOW, from our guts that there is something wrong... but the reward of hearing the first complete sentence, to see you child finally not scared of the wather in the pool anymore, to realise one summer that he can swim in his own particular way... that with an adapted bicycle, he can bicycle!!!! Those rewards are so worthed all the worries, and battles... even wars we went trough for those children!

Hang on there! It' normal to feel as you do! To see one kid develop "normally", and the other one staying or struggling behind, it's hard... Stay hopeful...

Danielle - posted on 01/28/2009

oH MY I AM SO OVERWHELMED BY THE HELP!! I just want to let everyone know that i will never give up I do have a developmental ped and an eye,ear,neuro,ot,pt,eating therapist and the list goes on and on. My son I think has a major motor planning issue as well as slight dyspraxia I have not vaccinnated him for quite some time but he was born with these issues i knew it the minute he came home. It is funny because I am a teacher my husband, mom, and mother in law are all in special needs but that makes it soooo much harder and having a twin that is totally and maybe beyond fine makes it worse. i am having terrible days because no matter how much people say that I iwll look back and say thank god i did this I am just not convinced. I am a young mom and just feel so jipped sometimes because by now I feel i would have been thinking about having another and yet i am bogged down. DONT GET ME WRONG ...Aiden is my life i love him but deep down inside I feel that I am missing something and that I can help him!

Tiffany - posted on 01/28/2009

Hi Danielle! I concur w/ Paulette. Get a DAN DOC! I am on my way to recovering my child and it is crucial that you start now. The earlier the better your chances to recover your children. I know about seeing a lot of doctors, but this is just the beginning of your journey. You can do it! I did! My favorate quote is "The Will of God will never take you where the Grace of God will not protect you" It is a long road but you will be able to do it, because your doing it for your babies! Get them on the diet, the GFCF immediately and like I said before, get a DAN doctor and start researching biomed. If I can offer any more info, pls let me know. PS DO NOT VACCINATE YOUR CHILDREN ANY MORE!!!! It will only make things worse, 100 times worse. I know from experience. Good Luck! I send you my thoughts and prayers!

Tiffany Batzel

Karen - posted on 01/27/2009

Dyspraxia is always worth reading up on, my son didn't talk til 41/2 I had to practically stand up and say...what is wrong with him. Try and get onto a Makaton course. Sign language with speak and hand gesture, help multi sensory 'conversation' if child can't verbalise, bay be able to use hands to make understood so you can add to 'speech by...'you want to sit in the chair over there' which you give signs, speech and moving hands all in one to help. Be detirmined you know your child and you know something is wrong. My son also was late walking, potty training, but was bright and intelligent underneath. He is now 16 and had problems with food and its texture, strong flavours, strong odours, can't use a hair brush our toothbrush and still can't tie his laces...don't know where you are but can always be intouch if you think this is any help. Dyspraxia helpline there is a dypraxia website but don't know it off the top of my head....just Google it . Most of all don't give up

Paulette - posted on 01/27/2009

Hi Danielle, I was thinking about how when we had our son in Early Intervention thru the school district...it was their mission to keep their costs down. If you are going through the school district I would change things up. You need a developmental pediatrician and the waiting list is exhaustingly long here in our state. Our son does have simular issues as yours with having speech, eating and sensory issues. We went to our ped. in another state and they gave me the song and dance....your a first time mom and your over reacting, etc. His speech dropped after his 18 month shots (he had an adverse reaction) and his #2's were like rocks. He also seemed to have a hearing issue. We changed peds. in the practice because I knew my child and there was something to it. The second ped was sending us to a hearing test but because of job loss we did not till later. It was normal. See he was so focused on what he was doing or watching, it is called 'hyperfocus'. His #2's were like that due to the fact that children on the spectrum can not handle dairy. I learned that from the DAN doctor we saw here. My son has sensory issues to like...automatic hand dryers and vaccuums, it is the high pitch noise. With eating children on the spectrum have trouble with the textures of foods...try Skippy All Natural Peanutbutter for protein and try different other textures...crunchy, smooth, dry and moist, etc. It is trial and error and does get easier. With speech I used the Leap Frog dvd's...Letter Factory, Word Caper and later Learning to Read at the Storybook Factory. I enunciated my words when talking to him and something I did which I am sure it was own preference was to place the palm of his hand on my throat so he could feel the vibrations of my vocal cords. We took our son to early intervention and also to a place which had speech, ot and pt at the same place, it was outside of what they did for him at e.i.. He went from speaking his own little lingo to improving to point now where he is speaking in sentences. He still has trouble with his speech but he is speech delayed with mild autism. A book that helped us was 'Overcoming Austism' and it will help giving you answers: http://search.barnesandnoble.com/Overcom.... If you would like to talk more, just let me know. It can be fustrating and I have been there. Your babies are beautiful! Keep yourself healthy by taking time to take breaks and relaxing. It will make a difference, believe me. Take care.

Suzanne - posted on 01/27/2009

Hi Danielle!

I cannot tell you that everything will be fine, but I can asure you that when you will find out what your son has, whatever he has, you will feel relief...

Let me explain: my son is premature. I had him at 27 week, weighted 2.1 pounds. After 11 weeks in the nicu, he was out of the hospital. Then we went to the ophtalmologist... and learned that he might never see... nobody had told us nothing about it in the nicu. But, finally, he has myopia, and doesn't see in 3 dimension... so, not so bad! At 15 months old, he didn't turn from back to front and didn't crawl... so, we went in physiotherapy, and when he was 2 1/2, we learned that he had a light form of cerebral palsy.... Our world didn't fumble, on the contrary.... We started to laugh, we were smiling as if we had won 1 million dollars! BECAUSE WE FINALLY KNEW WHAT WAS WRONG!!!!! Then, when we was 4 1/2, the doctor told us that our son had autism, Asperger syndrome with ADHD... then again, we felt SOOO relief... bcz we knew that ther was something to be done. And the last diagnostic we had, he was 6 1/2, and it was for Severe Dyspraxia.... and again.... rolled up our sleeves to help him out. Our son is in 4th grade, regular school, regular class with regular teachers and kids... it's just that everything is adapted for him, so he can follow the kids and the cursus.



There is hope, there are things that we, as parents, can do to help our kids... when we know what is against us... once we know, we can do something.... I won't tell you that it's easy, bcz it's not, but it's sure worth it!



I hope i didn't discourage you, bcz I do understand your feeling, so continue hoping for the best, continue giving him what he needs, and I'm sure the universe will give back at you in the most positive way!!!



Good luck!!!!

Paulette - posted on 01/27/2009

Hi Danielle, Here is some info that was given to me: FINDING A DAN DOCTOR: http://www.autism.com/dan/danusdis.htm (It is recommended to interview at least two, and obtain parent recommendations).

CHOOSING A DAN DOCTOR: SAMPLE QUESTIONS TO ASK: http://www.autism.com/dan/ques2ask.htm

DAN links: http://www.autism.com/treatable/index.ht...

Autism Research Institute (ARI) – Main site: http://www.autism.com