concerned mom's picture
concerned mom

diagnosis--developmental delay

Hi,

I'm writing as a new member, looking to share our story and to get some feedback.  At 2 yrs old, my son entered early intervention for a speech delay.  At 3, we decided to place him in a pre-school disabled class, where it was recommended that he receive speech, OT and PT.  I definitely agree that he needs speech therapy, but I never would've thought he'd need OT or PT.  But I thought, it won't hurt, so why not.  Looking at him, he appears to be a normal 4 yr old, but it's evident that when he speaks and interacts w/ others, he has a problem.  The problems include comprehension of instruction, focus, memory, and processing.  Also, we just increased his OT because we feel he may have some sensory issues as well.  Our son's speech therapist thinks he may have a processing disorder and some word finding difficulties.  Although he now speaks in full sentences, his words are sometimes jarbled, and he also has difficulty articulating certain sounds.  Socially, he interacts well with his peers, and he is generally a loving, happy child.  I do notice that he does better in smaller settings or in 1 on 1 situations.  For example, we signed him up for T-ball, and he was like a whole different child, all over the place and not able to focus on the game.  It's almost like he became over-stimulated in that environment.  Academically, he's progressing, but at a slow pace.  He knows all his colors and shapes, but he still mixes up his letters.  We haven't worked on numbers as much, so he needs practice with them.  It seems though w/ repetition that he can grasp concepts.  It just takes him time to learn new things.  Sometimes, we find he forgets a concept, so we have to repeat it until we feel it has clicked.  Overall, he has come a long way since we first started.  He continues to receive speech, OT (for fine motor and possible sensory issues), and PT (to help increase his muscle tone, which is considered to be in the low normal to normal range).  It's just frustrating for me as a parent not knowing what's going on w/ my son, and what the future holds for him.  I've done a lot of research, and I've sought out advice from professionals and other parents, but no one can give me any answers.  They all tell me he's too young to officially diagnose.  Does anyone know anything about processing disorders or have a child that is going through a similar experience?  Is this a disorder that could lead to further issues?  I've read that children w/ APD can also develop dyslexia?  Also, I wonder if my son is just a slow learner.  He seems smart, but he just has trouble when it comes to grasping certain concepts at the same time as other children his age.  If any of you share a similar story, please reply.  Thank you so much!

Sincerely, concerned mom 



Kathy Fitz's picture
Kathy Fitz

Sounds like you have done a great job and continue to strive to find appropriate answers. Wish my daughter in law would do the same.

I personally would continue to get a clear diagnosis. ....and it is never to early to ascertain what is going on with a child. Unfortunately, some parents remain in denial......for a long period of time. The earlier services can be provided the more likelihood of great progress, being made.
Where do you live? Do you live near Boston? If so I would highly recommend evaluations for Sensory Integration, Speech, OT and PT
and a complete neurological work up. If billed correctly all this should be covered by your insurance company. My guess is your son is dealing with several issues that need to be address in a collaborative way so all clinicians are on the same page.

Continue to seek out programs and professionals who can help. ..and may I suggest swimming instead of baseball....also Karote, which can help improve his listening skills and boost his self esteem.

Keep up the good work. Mom's like you make all the difference.

Peace,

Kathy RN, MS

concerned mom's picture
concerned mom

Dear Kathy,
Thank you so much for your kind words. It always helps to hear positive responses from others.
We live in NJ, and we're fortunate to have access to a variety of great medical providers in our area. At this time, our son still attends a special ed pre-school, where he is doing well. He also attends our town pre-k, which we feel is not the right place for him. Our son continues to receive speech, OT and PT. We also joined a social group through a local hospital which is great. I'm still striving to find answers for my son, but I've gotten past the stage of trying to find out why, and I'm now focused on what we can do to help. Our local school district is unfortunately not very helpful, in that it's evident they're not looking out for our son's best interest. It's sad because it all comes down to money.
I will look into our insurance benefits more closely. As I understand it, these services are covered up to age 5. I agree w/ you that my son needs a full neurological work-up. We took our son to a neurologist a while ago, but at that time, the dr. didn't feel it necessary to do more than a routine exam. We have been following up w/ a Developmental Pediatrician regularly, though. I'm also considering an Omega-3 supplement for our son.
I love your suggestions for swimming and karate. I looked into classes a while ago, but we've been so busy w/ the medical and school issues, that we haven't had much time for recreational activities. I also have a younger son who wants to do everything his brother does, so financially speaking, it gets expensive. We try to do all that we can, though.
I wish your daughter-in-law all the best w/ her child. It's a very difficult thing accepting that your child has a problem. I was fortunate in the beginning because if it wasn't for my son's pediatrician, I probably would've waited before taking any action. Maybe she should talk to her child's pediatrician. I don't know the nature of the problem, but it wouldn't hurt to discuss any concerns or seek a professional's opinion. Often, it's just a delay, and the child will catch up. In any case, though, it's nice to have that piece of mind to know you are doing all you can to help your child progress to the best of his/her ability.
I wish you and your daughter-in-law all the best. Sorry this is so long. I always write a book! 8- )

newton3x's picture
newton3x

Your story sounds so familar. My son is 2 1/2 and the sounds to have the same type of actions; behind and diagnosed with a delay.
My wife any I have also done similar early intervention thru the local school district. We just had another evaluation after being in the program about a year. Now they tell us they'd like him to get in a more intensive program. They are still telling us it's too early to tell 'What' is going on. I'm less concerned with 'Why', but if we don't know 'What' how do we help him the best? I really don't want to have my child labeled with something that's going to follow him the rest of his life, but if he has something I don't want to postpone getting the appropriate help. How are things going for you now and do you have any suggestions that have helped you.

concerned mom's picture
concerned mom

Dear newton3x,
I'm so happy to hear from you! It always helps talking to others in similar situations. My son will be turning 5 next month. He'll be graduating from pre-k tomorrow! In Sept, he'll be in a trans-k program at the private school. It's a kindergarten program, but it's geared towards kids w/ special needs. We fought to keep our son out of public school this yr b/c we feel a mainstream class will only set him back. Our other option was to mainstream our son, but have him pulled out for smaller classes in the core subjects. We chose not to do this, b/c we feel he's doing well in the private school, so why mess w/ a good thing. Our son is still not diagnosed, but b/c he's turning 5, he needed to be labeled. He went through a series of tests (speech, OT, PT, psychological, educational, social...). His greatest weaknesses were in the area of speech and language, where he scored the lowest. We were pleased, however, to see that he did relatively well receptively. He scored in the average to above average range for IQ! Due to his expressive delays, and based on his scores, our son was labeled Communication Impaired. I still wld like to know what that means, as I'm always striving for answers. I agree w/ you 100%. It's not so much about the label, but about knowing what exactly is going on, so you can do all you can to help. If I were you, I'd accept everything the school has to offer. It's not gonna hurt. Also, make sure you get outside evals from doctors and therapists, b/c from my experience, the schools don't always tell you everything. If you can get regular, private therapy sessions as well, that wld be great. For us, it has helped to have opinions from a medical viewpoint as opposed to just an educational opinion. Teachers and therapists in schools are not medical professionals, so they can only say so much. Also, for your own selves and your family, it might be helpful to go for counceling. We did, and although we still don't have all the answers, it has helped us to better cope w/ the situation. Please keep in touch and let me know how things go for you and your son. If you have any further questions, please feel free to write back. I wish you all the best w/ everything.

starry's picture
starry

A wonderful book on SPD is The Out of Sync Child and The Out of Sync Child Has Fun. I am a paraprofessional in a PSD class and have found this book to be a great resource of information. It may help to answer some of your questions regarding SPD.

concerned mom's picture
concerned mom

starry,
thank you for your recommendation of the titles you listed. I'll definitely look into them. Any bit helps!

Emmatum's picture
Emmatum

my daughter now is 15 with global development delay disorder and what a struggle its been. but it sounds like you are doing everything right for your son. all you can do is repeat anything new and in small segments. if i told my daughter to do three things she would do the first and try to do the third. i found that if i told or taught her 1 thing at a time it was easier. and as far as school went i was very involved with any concerns or issues that needed to be addressed. she like routine and if something was going to change we told her about it ahead of time and prepared for it weather it was a doctors appointment(again) or a field trip to somewhere special. and being a single mom it was a family affair, her older siblings came along too. she had issues with her muscles and bladder control. and the speech therapist told me that the roof of the mouth has a muscle that wasnt developing but through patience and time she speaks clearly now. although when she gets excited its hard to understand her but we get through

concerned mom's picture
concerned mom

Emmatum,
I'm happy to hear that your daughter is doing well overall. It is a difficult process, and I give you a lot of credit raising your children as a single mom. It has helped me to lean on others for support, especially those who are going through a similar experience. You learn as you go, and you get stronger over time. My son has taught me so much about love, dedication and hope. I wish you all the best.

concerned mom's picture
concerned mom

Thx, lumpkin. Your advice is very helpful. I'll definitely look into the website you recommended. We have a computer program called Earobics. I purchased it through Super Duper, Inc. I'm pretty sure their website is www.superduper.com. This program is also good for kids w/ processing problems. I also have the book, The Out of Sync Child Has Fun. It's a great resource.
Don't let your child get discouraged. Always pt out all his positive qualities, and let him explore all the things he enjoys and does well. These things will help boost your son's confidence. Everyone has his/her strengths and weaknesses. Your son will eventually find his nitch. Do your best to remain positive. This has helped my son tremendously when he gets discouraged.

concerned mom's picture
concerned mom

ladeanda,

Thx for your story. It gives me hope for my son's future. My son has yet to be diagnosed. He's turning 6 in July. It's suspected that he may have ADD b/c he has trouble staying focused at times. I've considered homeschooling him, but right now he's doing well in his spec ed program. I'm happy to hear that your daughter is able to hold her own at this pt. Obviously all your hard work has paid off. You shld be very proud of yourself and of your daughter. I wish you both all the best.