Just a Speech Delay?

Take her to Dr. Mason at Cincinnati Children's Hospital. She heads the Developmental Pediatric Group. I've taken both my boys there. It takes some time to go through all the analysis but it's worth it. Don't delay this. The earlier she gets help, the better! J.

S., I am a certified early childhood special education teacher...and have taught for 10 years, I recently have begun my own business..but have quite a bit of "expertise" to share if you want a "listening ear" or someone to express your concerns and frustrations as well as help you to serve as an advocate for your child. email me if you ____@____.com

We went through the same thing with our son. He exhibited similar habits that you describe. We were worried when he did not talk, not even to say mama at 2 1/2 years old. He was diagnosed with Apraxia after undergoing 3-4 months of speech therapy. He was admitted to the help me grow pre-school program through our local school district and showed no progress. We dealt with horrible temper tantrums. For this, I recommend sign language. There is a great set of DVDs called signing time. They were originally created for kids with hearing disorders, but they are fun and all three of our kids loved them. It was a tremendous help with controlling the temper, because we gave him an outlet to communicate. We also used site cards, letter & numbers. We provided daily games to encourage his vocabulary and worked with him on writing basic letters.

On the medical side, I am not sure if they have performed an EEG on your son. They did this to Adam. It was horrible, I would not recommend it, only as a last resort. I could not stand to see a child put through what you would think is such a simple & painless procedure.

One day for whatever reason, out of the blue started speaking (during the summer), when he went back to school the teachers were shocked. Don't get me wrong, he is still very OCD, perhaps ADD and has just about every speech impediment that a kid can have but he has come a long way. We now talks, writes and believe it or not can read. Somehow is was taking it all in and putting it to memory. He will be 4 in march.

I will tell you that there was history of late talkers on with my husband's brother, who did not speak until he was 4. I guess they did not make a big deal about it in those days.

I am happy to answer any other questions that you may have.

Hi S.

I am not a nurse but have you had her checked for autism? It sounds like some of the symptoms. Toys neat in a row, tatrums if things don't go her way, speech delayed, upset if anyone touches her toys and easily upset with change. Most autism children have a real hard time with change. It throws them completely off track. Wishing you and your family well.
D.

Hi, S. -

I don't have any advice from personal experience, but a friend of mine has a daughter whose development has been very slow and she exhibited an array of confusing behaviors. After many consults and evaluations, doctors suspected that she might have what's called Chiari Malformation - http://www.northshorelij.com/body.cfm?ID=6409 - which, they theorized for her, was manifesting in too many signals going on to her brain to permit her to be able to weed through them to speak.

She had surgery and she has made slow but steady progress. She's now about 6 and is able to speak, but she didn't begin to speak until she was approximately 4, after her operation.

Her symptoms didn't match those described at the link above, but the way the malformation manifests itself often leads to mis-diagnoses and missed diagnoses. I just figured I'd throw it out there for you as one more random thing to explore.

One other thing -- perhaps your daughter is acting out lately because she's not able to express herself the way she'd like to. That would be an understandable frustration, I think.

Take care - it sounds like you're an amazing Mom!

My daughter also needed speech therapy starting at age 3. I will tell you that 1) no one ever really could tell me what the cause of her speech delay was, although she was recently diagnosed with ADHD (she's 7 now), and I have read that it can cause speech delays; and 2) her tantrums were AWFUL. After about a year and a half of speech therapy, her speech was to the level of her peers, and her tantrums went way down. I think that it's only natural for children with speech difficulties to have tantrums--they just can't communicate. I think you're doing everything right. Hang in there--I know this can be a trying time!

S.,

Although I do not have either experience or a similar story to share, I do want to encourage you to trust your gut on this one. You know your child better than anyone else. Each doctor that you see is literally trying to get a sense of your child in a matter of minutes. You have spent hours, days, years observing her. I think the other comments are good ones - there could be a variety of things going on here - everything from OCD (Obsessive Compulsive Disorder) to autism of another sort (Autism is a generic term that covers a wide variety of behaviors that the doctors haven't figured out WHY they happen, but use to agree that something is going on different than the norm), perhaps some kind of food sensitivity or allergy, or a reaction that occurred to a shot she may have received. From the books I have read about autism, it is important to realize, that just because they are exhibiting certain behaviors that may make their entry into society more challenging, with hard work, attention and never giving up hope on your part there is much that can be done. I wish I could recommend to you the book I read about it but I forget the name. It was a neat book, true story written by the mother about her child. The fact that your child is exhibiting these specific tendencies in no way is an indication that she lacks intelligence, just that it may be showing up in a different form than other children. She may simply have different needs than other folks. To me, it is children like this that remind us so much how different we can all be and how we still bring special gifts into the world with our presence.

We have some things in common, S.. I have a son who was born at 32 weeks gestation. He is now 21 months old (19 corrected), who is not yet speaking. He's also enrolled in speech therapy. He's also going to be evaluated by a specialist in developmental delays and autism (also known as PDD) at Akron Children's Hospital. They have a great program there. From what you've described, it sounds like classic autism, even if perhaps just mild. There are literally, over a hundred forms of autism ranging from mild to severe. There are tons of websites full of helpful information out there. I tried to post some links here but it wouldn't work. But you can always email me, also!! (____@____.com) I know it's overwhelming, we're in the same boat, trying to digest all of the information we've been reading, and coming to terms with possibly having to deal with this for the rest of our lives. I've told all of our family that Ben will be fine, and that we're handling it well. And while that may be true for my husband, it's not quite so true for myself. I have found myself in a heap of tears more than once this past week. We had planned on TTC #3 this year, and now I'm thinking it'd be best not to have any more children. Our oldest has ADHD, then add in all of this with Ben. If we end up with a DX for Autism or something similar, it is going to require a tremendous amount of time and energy in various therapies for him. So, I guess what I'm trying to say is, if you need a listening ear, I'm here. Feel free to contact me. We can go thru this together.

S., My son had a speech "issue" when he was young. I tried to get doctors (or anyone) to believe me. When they finally did, he was 4. We put him in preschool and that helped, but the biggest help was speech therapy. No one could give me a DEFINATE reason as to why he had a problem. He just didn't talk for a long time and when he did it was VERY garbaled and incoherant unless you knew him REALLY well. He was in speech therapy from age 4 to 7 or 8. Also, please note that if you are unhappy with your first therapist, please find another one. The first therapist we had acted like we were a waste of her time. The second one was a gift from God! Miss Phyllis was WONDERFUL. Also, some insurances will not cover speech therapy unless it is due to a stroke or accident. Check around... where we went offered several payment plans... they had a sliding scale based on your income, they also had a deal if you paid for a month or two in advance, they knocked the cost of several visits off the cost. To me, it was worth it all. He still has "slushy s's" today (he is 17) but it is only noticeable "some of the time" (more noticeable to him) and he does very well. The only reason he didn't continue in speech therapy (to improve his S's) was he didn't want to. Now, he regrets it a little, but he did phenominal! Don't be discouraged. Your daughter will be fine. And, if they can never tell you why, don't worry... just know it's okay and turning around now. :)

S.,

My suggestion would be to have your child evaluated by specialists that can diagnosis children in the Autism Spectrum. She may not have any problems, but, better safe than sorry and the spectrum is from very mild to extreme.

Good Luck.

E. Anna

Congratulations for following through so early and getting your daughter lined up for the preschool program! Right now what matters most is that your daughter's communication delay is being addressed through therapy and the preschool program will provide her with perfectly developmentally appropriate activities! It doesn't matter what her "diagnosis" is at this point; I know you'd feel better if you had a consistent "tag" to explain some of her unusual behaviors, but she's probably too young for a precise diagnosis.

I've been a school psychologist for 26 years and worked with little ones 2 1/2 to kindergarten for the past 15 years. I have 3 sons, ages 25, 22, and 17. Between my career and parenting, I've come to believe that every child has her/his quirks and areas of "intensity." The more relaxed and accepting, nurturing and accessible we can be to each, the more secure and "ok" with themselves children feel. A consistent home routine, with parents saying what they mean, and meaning what they say, is crucial for children like your 3 year old. If you're able to spend 5-10 minutes daily, with just her, doing something she enjoys, it should build and maintain rapport and feelings of cooperation and love. Relax, focus on her assets and progress, and enjoy your "best of both worlds" family life!

S.,
Hi, I can relate to this problem you are having with your daughter. I also have a similiar problem and the doctors put off having my daughter tested until 3 years old. She is now 3 and still has some speech delays. She also stands on her tippy toes and walks; along with hand flapping. This is typically known as food allergies. The book called "Is this your child, discovering hidden food allergies" by Doris Rapp, has helped alot but has been very frustrating. My son went thru similiar, only worse symptoms when he was a baby and it wasn't until he was 2 1/2 years that he was supernaturally healed by Our Lord thru a church service before he got any relief. My daughter is doing much better now that I took wheat out of her diet, crackers especially. What she craved is what bothered her the worst. I will be honest, after she received her first set of shots, DTAP, she began having the same reactions my son went thru for over 2 years! I began doing my own research and found out what was involved in the shots and to my horror couldn't believe what chemicals they put in these. Upon my doctor's advice I continued with the vaccines, only didn't receive the Pertussis in the DTAP, only the DT. I now realize what a mistake this was and now have a healthy baby girl 5 months old with no vaccines in her system. This is the first time out of 3 that she does not display any behavorial or physical symptoms due to the fact she has no vaccines. I also breastfeed and she has not become sick even though my whole family has came down with some pretty nasty sickness this winter. The doctor's tried to put fear in me that she wouldn't be healthy. They have been soooo wrong! The chemicals in the vaccines have weakened my childrens immune systems and we have had problems since. My son is now great and my daughter like I said is doing better since I took wheat out of her diet and also am doing a yeast cleanse from her body that has sugar buildup. You can find Yeast-free, gluten free diets online and see if that helps her. I also am a firm believer in Chiropractic care since NONE of my children have had an ear infection and my son is 10years old, daughter is 3 years!! It opens up the glands behind the ears so they can drain properly instead of infection setting up. I am a stay at home mom and love it!! Hope any of this helps. God Bless! R.

If she has been diagnosed with PDD and apraxia she should qualify for your local school district special needs preschool. Have you transitioned out of Help Me Grow yet? What you are describing sounds like both apraxia and PDD. In addition to speech therapy have you tried occupational therapy or any behavioral therapy to address the PDD?
I have a 6 1/2 year old son with apraxia and autism.

Hi S.. I am a mother of 2 boys, 2 1/2 years and 8 mths. I am a speech therapist who can understand your frustration. Unfortunately, it sounds like you've had a lot of evaluations by individual providers and noone is really working as a team and looking at the whole picture. It's so frustrating for me to hear that the Peds didn't pick up on things sooner, especially the speech. I can't say for sure what your daughter has and what is causing her speech delay. It could be a number of things. Of course any hearing loss (in the past or now) can contribute to the problem, but it sounds like something more is going on as well. If she is experiencing other problems with the rigidness and breakdowns I would recommend going to see a developmental pedicatrician. She could also have something known as a sensory disorder. Treatable, but can cause a number of issues. Working out sensory issues can be life changing. It helps everything else fall into place. Continue with speech therapy, take advantage of Help Me Grow and their resources. As for your daughters most recent behaviors, it's most likely related to all the change going on. The evaluations, therapy, people placing new demands on her. Her routine has been upset and she doesn't know how to cope just yet. What your experiencing is normal. I've seen it many times. Most importantly is finding her a way to communicate. This can be incredibly frustrating for kids. Good Luck, S.

My granddaughter has been diagnosed with Fragle X Syndrome. She is 3 and can throw some real tantrums. She also has speech problems, the disorder is found in the chromosones. Maybe you should check with your doctor and see if you need to run the tests. I know that there are several chromosone disorders and they can cause problems.

Hi S. - Your daughter may be showing signs of autism. The earlier intervention is done with autism, the better the results. The work done with autistic kids is pretty intensive (and starts as young as 1 1/2) but makes a HUGE difference in the long run. My cousin is autistic and didn't speak until 4 years old. You should also consider finding a different pediatrician but first ask yours for a referral to the BEST AUTISM SPECIALIST he/she knows of.

1) PDD is the "Umbrella" under which Autism "reigns". There are quite a few different disorders under the PDD umbrella. One of the main characteristics of a PDD is lining up toys/stacking toys. Walking on toes is another. Speech delays, temper tantrums, sleep and potty issues are all symptoms/characteristics as well.
2) Stick with the PDD dx and go from there to get her the help she needs. It will give you the most for therapies and services.
3) Come visit us on the Autism Board (for any part of the Spectrum) "A Piece of the Puzzle" http://kyautismmoms.9.forumer.com

4) Just to clarify, *most* people call it ASD (Autism Spectrum Disorder) but it is not. ALL forms of Autism are under the Umbrella of Pervasive Developmental Disorder: Asperger's, Autism, Childhood Disintegrative Disorder, Rett's Syndrom (only affects girls) and Pdd-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) It's just easier to tell someone who is not familiar with the terms that your child has an ASD or is on the Autism Spectrum

Hope that all helps-and come visit us anytime! It's an up and coming board, so don't be surprised by the minimal posts there. Still lots of info in our brains bursting to share! :-)
M. (admin for A Piece of the Puzzle-Chele4711)

S.

im a mom a special needs child. what your describing does sound like autism. they best advice i can give you is to change doctors. you are your childs advocate, and if your doc isnt going to be on your side and help then you need to find one that will!!! i had to learn the hard way when doctors said it was ok my daughter is 4 and has a very serious disease called mitochondrial disease. the sooner you get help the better there are so many wonderful ways to help children with autism and the sooner you catch it the better. remember you know your child best doctor sees them for only a few minutes. C. w

S. -
From experience with a child diagnosed PDD at the same age or earlier with a speech delay. As an almost 11 year old, the PDD-NOS is still there. The speech is still there. Dyslexia is a component we deal with and are getting him multi-sensory instruction. You can learn more at www.diaohio.org on that piece. As with any and all, early detection and intervention is the key. The evaluations at that age, "should be fun" though still frustrating for young children.

This frustration often is where the child can not get their true feelings out. Time should help, but I wouldn't rule out further diagnostics.