Premature=Developmental Delays??????????????

Hello M.
My oldest son 3yrs old this last July, was born at 1 lb and 7 oz at 24 weeks. For my son it is being dirty. Can not stand it any thing on his hands it's okay for like 2 minuets while he's having fun and then the freaking out begins out comes the wipes and cleaning up his hands start from ketchup to sand doesn't matter. In our house we just call him the neat freak and the OCD child jokingly. Autism is when they can not form regular emotional bonds with people it doesn't sound that way for your son I do HIGHLY recommend O.T. we did that as well as P.T. you can learn soooooo much from your O.T. and how normal your premie really is when we brought him first home laying on his stomach for 25 seconds was celebrated with much enthusiasm and now upside down on the sofa watching the letter factory is the norm. He is a bit more distant than my two year old but I think that is because he was in the hospital for 4 and ½ months and we couldn't hold him until he was 2 months old. We still have tons of fun. He still has sensory stuff he loves to be sandwiched with pillows some times he will crawl into the pillow case like a sleeping bag with the pillow still in it and he loves small spaces any thing the size of an incubator it seems and he just lays there and talks to him self that is where he got his start so there is going to be some going back there. And to be honest what is normal this is now our normal there are times I feel he thinks that we are push overs and I get frustrated and just remember he is a toddler and he came very early so it is trying but it is what makes my son who he is I can’t go back and change what happened it happened for a reason. And the OCD part does drive me crazy but I just think look at what Howard Hughs accomplished do you think he would have done so many great things with out the OCD most likely one or two but who knows. One bit of advice I’ve taken from a very unlikely source was from a photographer just look at it from a different angel you want to take a picture of your house why not climb on the roof and see what your house sees every day it tends to be beautiful up there. What about your son perhaps the silkiness of your hair is what he loves about you and he needs that little extra bit a few times a day to feel close to you maybe get him a very silky blanket it doesn’t even have to be very big just cut a square of silky fabric and see how he likes it. It may help I do realize that can be annoying the eyebrow thing I have to say would get to me after a little while. I know I’m wordy but I hope this helps and please do call the O.T. they are wonderful. Sending loving thoughts for you and yours
Ange

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M....as a Special Ed. teacher I have seen a lot of this before..take advantage of every service you can!! The nore help your child gets now, the better off he will be in the long run. Sensory issues can be lessoned with therapy and I am sure the therapist will give you things to do at home too. My advice to you would be continue to set the bar high for your son in every area. Set small goals that are reachable, but keep setting the bar higher and higher. Children will only progress as far as we expect them to!!As for your husband..we all deal with this type of problem in a different way. He will probably come around. Make sure you try to really include him each time your son improves or learns a new skill. Try to have him help practice these skills at home.

Good luck!

S.

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M.,
I worked with kids with special need and Autism for 9 years prior to retiring to be a full-time mommy, and some of my "developmentally delayed" kids had all three services (SL/OT/PT) as well as being in my classroom for kids with special needs. At age 2 it's pretty common to see multiple services to catch those kids up to their peers. And, sensory problems (if he has them) do not always indicate autism.

The hair thing is not uncommon to me personally, my 3 1/2 year old (without disabilities) used to play with my eyebrows or run his fingers through my hair, I think mostly b/c I did that to him when he was little and it's a comfort.

As for your husband's frustration...it's common to see that as well. Many parents find their marriage stressed to the limits with a child with special needs. My advice is to seek counseling as a family and individually for each of you to air your concerns and take an active role in insuring that your marriage does not become devastated by this. I also personally think that dad's take these disabilities harder than moms (maybe it's our survival instinct to stay and fight and theirs to flee), and even if he's not interested in a counselor, to find other parents of kids with disabilities to support both of you in your endeavor.

good luck and feel free to respond privately if you'd like to talk more.

M.

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M., my son was not premature but we have been dealing with developmental delays for a few years with him, most likely from trauma during delivery but even that is not certain. Anyway, he is 4 years old. He goes to Speech therapy three times a week, Occupational therapy once a week and a special developmental preschool program at CDS four half days every week. He also has symptoms of OCD and sensory issues. I have done extensive research and have been very proactive in my sons's care and development. Autism is a word that has been brought up occasionally over the years BUT we don't think it applies anymore. He IS progressively catching up to his peers as he gets older. PLEASE do not let any doctor tell you that your son is Autistic so young. It can't typically be diagnosed at this young of an age because the symptoms mimic so many other things...PDDNOS, Aspergers, to name a couple.
Anyway, the points I want to make are:
A. Your sons fixation on hair is typical of several delay disorders and autism SPECTRUM disorders (NOT just Autism). Count your lucky stars it's just hair because for over a year my son was fixated on bathrooms, including port-potties. YUCK!!! It's likely as your son gets older his fixations will change. My son started with fixating on doors (had to open any door within his site) and then rocks (had to pick them all up and feel them..imagine a flower bed of river rocks and how long it took us to distract him! LOL) Therapies and distraction techniques will help you retrain his brain but remember, it's not something he can help. It's a misfire in the brain BUT as he gets older, it may get better and easier to curb.
B. Be patient with your husband. Of course, he loves his son. But finding out that your child is "different" in any way from others is hard, no matter what and some parents find it harder to reconcile to the idea than others do. It doesn't mean he loves him any less than you do or he doesn't want to be involved in getting your son on the path to a functioning life. It's a big shock, especially to men with their inflated idea of masculinity, etc. Give him time to go through the steps he needs to go through to come to terms with this news. He may get angry about it, sad about, he might even grieve. It's normal. Just be there to talk to him about it and answer his questions when he's ready. Meanwhile, get proactive. Learn anything and everything you can about developmental delays, get involved in your sons treatment plan in an agressive way and become an expert on your child and his capabilities and limitations. Be creative, think out side the box and learn what works for your child. I guarantee you that you will know your child better than any doctor or specialist once you become active and educated about him. YOU can make a difference in your child's future no matter what his developmental issues are, don't sit in the backseat and be passive and your son will conquer the tallest mountains, with mom and dad by his side!

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My son was born 2 weeks early but stopped breathing when he was born. They started him breathing again but I think it has something to do with his slow development. He is almost 4 and is now starting to talk sentances. He didn't walk until he was about 2 1/2. "they" thought he was autistic too. I didn't beleive it because he could always make eye contact and my mom is a RN and did a lot of research on autism and didn't think he was either. It is bad to put labels on children just because they aren't progressing the way other childeren are.
The one thing my son does is he has a couple of crocheted blankets. They are both white. His father and I are divorced so he has one at each house. He likes to carry the blanket around with him and stick his fingers in and out of the holes in it.
By the way, we had both O.T. and Speech therapy and they are both a huge help.
One thing I realized when I seperated from my husband is that he wasn't stimulating my son enough and once my son received more consistant stimulation and praise from me, he started really taking off.
He is not autistic. He just has a lazy dad. His father stayed at home with him while I worked and I didn't know what he did all day and by the time I came home, my son would be all over me for attention.
His father still doesn't beleive that he is not autistic. He says "let the experts figure it out" I think that kind of attitude is detrimental to my sons development. Always be positive and think positive and beleive in your son.

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Hi M.,

I do not know much about autism and developmental delays but I will pray for you that you find someone who can help you.

As far as your husband is concerned I do have some advice for you there. It is perfectly normal for him to feel disappointed and possibly even just plain angry - he expected and desired to have a one hundred percent healthy, perfect baby (as you probably did)and it did not happen. He cannot change how he feels about it and he will have to work through the bad feelings before he can come to the conclusion that he is still blessed to have an imperfect son. The worst thing you can do is get angry at him for having bad feelings. We all do. I suggest you tell him that it is o.k. for him to be disappointed and angry and that if he wants to express it to you he should feel free to do that. It is not a license for him to stay angry/disappointed forever, but he cannot move forward if you do not let him have the feelings. Also, you might want to explore the reason why his feelings make you so angry. Just because you are the mother doesn't mean you don't have bad feelings too! God bless and I will pray for you and your family.

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I can't offer much other than to say that the disappointment in your husband's voice is probably FOR all three of you- NOT because of your son. He's probably a little sad that things aren't like you imagined they would be and a little sad for his boy that things aren't easy for him- like they should be. One of my friend's children has some special issues and as she was adjusting to how her life WAS, rather than how she imagined it- she used the analogy of her son's life as compared to going on a trip. All through the pregnancy you imagine you're going to Hawaii- a beautiful paradise- you spend 9 months dreaming about Hawaii. Once the baby's born - you realize that you're still on a great trip- it's just that you're in Venice. Still great and beautiful- but totally unexpected and wildly different from Hawaii. Don't lose hope! My friend's son is awesome and he's made tremendous gains since he was little (he's 7 now). Good luck!!

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Hi M., My son was born 10 weeks early and was in the NICU for 5 weeks. He is now 4 1/2. I would say that he is finally "caught up" with other children his age. He reached his milestones much later than my friend's children and that was difficult because everyone likes to "compare". At 4 1/2 he does not have any development concerns but that does not mean I never had any concerns about his development. Talk to your pediatrician. Talk about any and every concern you have. Believe me my pediatrician heard it all from me. But your and your hhusband are his advocates. I know he is nearing two but given that he was almost 7 weeks early, he is around a 1 1/2 yr olds milestones. You may also want to ask your pediatrician if there are any support groups for parents of preemies. I know my friends and family always meant well, but they really did not understand what we were going through. It is scary and stressful, but hang in there and feel blessed to have that little boy in your life.

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Hi.

I have worked with Autistic children/adults, and my degree is in psychology with a focus on cognitive neurology. As far as I have seen, the hair fixation does not indicate Autism. In fact, if he likes to touch it, he probably isn't Autistic. (They have something called tactile defensiveness, which is the fact that they hate touch.) If you are concerned about it, then ask your ped.

Dev. delays are common in premie babies, I am sorry to say, but at least your are intervening early to assist him.

As far as your husband, it is normal for him to be disappointed, but the fact that your son is almost two and this is still a prominent feeling with him concerns me. I think maybe this indicates that you guys need a diagnosis or at the very least, a full cognitive work-up so that you can deal with whatever the results may be, maybe then you can move forward.

Good luck.

L.

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Hello M.,

I am a mother of a preemie too. My son was born at 29 weeks and weighed under 2lbs. He was very premature. He is now 5.
He walked at 19 months and ate pureed food until almost 3.
He is now 36" tall, same height as his 3 year old brother.
I noticed one thing, once you have a preemie, you get all those infos about developmental delays, speech problems etc. It's good to be informed and be prepeared for whatever BUT try not to rush into every test and therapy. Give your son time to develop on his own.

My son was to see a speech therapist, we didn't take him to see one coz we have a nephew who wasn't a preemie who didn't talk until 4. My son suddenly started talking at 14 - 16 months.

He didn't walk at 12-13 months. He walked at 19 months without seeing a therapist.

Pureed food issue was a big one coz he had problems swallowing, we were to take him to a therapist, we didn't and he is fine. He eats everything now - veggies too.

My point is: preemies, are preemies. They came out early so we have to adjust our expectations to their would have been ages. Your son is almost 2, but in reality he is 21 months old. Ask around parents of 20 - 21 month old kids, hear what their kids do. Put in a lot of faith, pray and accept.

About your husband sounding disappointed, I guess that's how men are. They don't cover up their emotions. Whatever they feel, they will let it out to be known. I believe you when you say his disappointment doesn't mean he doesn't love his son. It might also be because he is worried and overwhelmed. No wonder God made us women mothers. He knew we could handle the pressure better than men.

Have faith and courage.
God bless you and your family.

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My son was born exactly two months early. He weighed 3.5 pds at birth and came home weighing only 4 pds. He had some breathing apnea probs till 9 months, and he did almost nothing (walking,talking,crawling) for two years. He had very severe flatness of the head.At two years of age, he rec'd speech therapy, occupational therapy, and special instruction. All once a week. He is almost 4 now, and he is "caught up" in every way. You would never be able to tell now that he was such a tiny preemie with all those developmental delays. When he was 2 1/2, he was categorized as an 8-month old baby, and some test he came out as a 3-month old. But he is doing great now with no delays. All those therapies he rec'd helped tremendously. So I wish the same happiness for your little boy. He no longer requires therapy. He is a happy, beautiful, extremely busy little boy now. He does have trouble with his ears though, which I'm not sure yet if his hearing will be affected yet in the future. He also rec'd therapy at AGH HOSPITAL every 3-6 months till he turned three. But he passed their tests with flying colors and they said they didn't need to see him anymore.

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My youngest son had sensory difficulties and occupational therapy did wonders for him. He doesn't have to be autistic to benefit from it. And as long as you frame the intervention as "fun" it won't hurt him. I'd suggest, though, that discussions about his progress or his difficulties occur out of his earshot, even at this young age.

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Hi M.,

A few years ago I read a book titled "Son Rise".
It made an everlasting impression on me and, perhaps it will be helpful for you and your husband.
Much Love & Peace,
s

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Hi M., my oldest son was 6 weeks early and also spent two weeks in ICU. When he was younger I would always hear from an ex-sister-in-law who had a son the same age that her son was sitting, rolling over, talking and walking before mine. Well, now I am very proud to say he is 17 and a senior in high school and receives very good grades. He has made very good choices in his life. And already checking into colleges. Please no matter what deveopmental delays your baby has just give him all your love which it sounds like you are doing great at, and enjoy each and every day with him. Children are so precious. I speak from experience when I say they grow way too fast. I have high hopes for your family that everything will work out great no matter what challenges are ahead of you. Just never give up hope. I will keep you in my thoughts.

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Hi M.,

I'm not a specialist, but I want to give you some encouragement. I will be speaking from experience only. I would say to have your son checked for autism. Don't give up on him (I know you wont) just don't accept a diagnosis, if you and/or your husband aren't convinced. Drive them mad crazy if you have to. Now for your hubby. HE'S A MAN! I know, it's not a justification, but that is the bottom line. He's probably feeling "less of a man". I don't think he's disappointed w/ your son. He's disappointed with himself, and probably has a hard time communicating that. He just doesn't have the tools to deal with in a healthy positive manner. Mothers are more understanding and forgiving. Fathers tend to blame themselves more, when a child is born with a disability. Have you guys thought about counceling? It's a suggestion. He needs to find a way to deal with this. I will pray for your family, but keep your head up. An elder told me something I needed to hear. I felt I wasn't a good enough mother. The lady said; "Baby your daughter picked you to be her mother." Children pick their own parents, remember that.....

Be well

T.

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don't worry he'll catch up my 5 yr old was born 5 wks early & spent 2 wks in ICU she has had therapy & is back to normal range & i have an 8 yr old who was born 3 wks early who is very bright but has ADHD & sensory issues ..your husband should be happy your son is healthy the rubbing your son does is a grounding behavior sounds like anyways he's 2..all my kids loved playing with my hair at that age lol..they more notice that mommy is seperate from them at that age.all kids are different in their own ways so they are all special.you can message me back if you wish gl

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M. -

This posting is a old but I am wondering how he is doing now?? And what is any other services testing you persued? I ask because my son Trey is approching 21 months and he has delays. Fine, Gross, Sensory and Speech. He wasnt premature but he has been in Early intervention programs for about 10 months. He receives Physical, Occupational, Speech and Developmental therepy weekly. He hasnt been diagnosed with anything else at the moment, we just got into a Deveplomental Peditritian last week and will be meeting with a Genetics dr and Neurologist to either find or rule out a diagnosis. He had many ear infections between 6 months and 15, which I always felt contributed to his delays and he has what they call low tone. He also has Sensory intergration issues that his OT works with him on. He has shown a lot of improvments but he does everything in his own time. Its been a stressful process so far and now we are going for further testing and its going to get more stressful I am sure.

I understand your fustration my daughter was born 7 1/2wks early(4lbs) and we were worried. We were blessed as she just turned 3yr with no developmental delays althought she will have to learn sign language as i am going deaf. Find a support group in your area for moms of special needs kids it will help you see that you are not the only one and they have great advice and comfort. Also have faith and pray for courage and the ablility to be the best mom that you can be and trust dad will come around it just takes some time.

Hi M., I was a mom in denial at first when my son got dx'ed PDD-NOS which in a nutshell in in the Autism Family. My son was not a premie but he started to loose his milestones at twenty month. He had OT and Speech before three and now attends a preschool designed to help him meet goals ets. He also still gets outpatient OT and Speech 2x a week. Early intervetion is KEY. Keep up the good work and if you suspect autism don't wait get his evalutated ASAP.
I wish I would of gotten my head out of my butt and listened to my husband sooner. Oh well I can't look back just forward. Good luck to you

N.

hi my name is R. i have two children r delay my daughter who is 15 she more delaye then my youngest in she school she selfskills class and she doing very well my youngest is in specailed class too she in all day in her class so how u know how u feel somtime im speaciled person too i was specailed class all my life im doing pretty good

My children receive just about everything in therapy. My son is 3 yrs old and was born 6 weeks premature, he had a rough start with jaundice and weight gain issues. He receives his therapy at special needs preschool and my daughter receives all her therapy at home still until she turns 3. It does get to be overwhelming sometimes but I know they aregetting the best care to meet their developmental needs. My son has PDD and a genetic disorder. My daughter has 2 heart defects and a genetic disorder. She does not fall on the autism spectrum from what we all know of. My son's autism diagnosis could change as well since his genetic disorder can show associated learning difficulties that are sometimes confused with the spectrum.