Having a really hard time...

My DS is turning 3 in January. He gets EI services for speech, OT, PT and a sp ed teacher. He's doing well and has made a ton of progress. DS went from barely saying a word to now saying 3-4 word sentences and has come such a long way in general. He was born a preemie and has some general delays. He also went through a time when he had 6 consecutive ear infections and seemed to lose so much. That was actually the catalyst to get DS services. DS has been in a regular daycare setting since he was 4 months old. I have taken him for audiological evals (fine), a renowned ped neurologist (fine with some delays), an ENT (fine), an allergist (DS has cold-induced asthma and some minor allergies).

It's me who's having a hard time coming to terms with certain things. I am PG and super sensitive so that doesn't help. We are now going through the transition process to CPSE so DS is getting new evals. DS is very rambunctious and has a hard time following directions. I took a trial class at Orly's Treehouse this morning with him and the first part of the class was overwhelming to say the least. The kids in the class with him were almost a year younger and able to follow what the teacher was saying. My DS wanted to run around and play on the gym equipment. When we transitioned to the next room for the dance portion, he actually did great and was able to listen, etc.

I just feel like my mind is going in so many different directions. I don't know what's typical toddler behavior and what is not. I happen to work in the sp ed field so you think I would know not to take a lot of these things to heart. Due to DS's distractibility, I wonder if he's going to do poorly on these evals because he just can't focus. I want him to get the services but just want him to be typical kid too, KWIM?

I'm sick of hearing about how all of my friend's kids are so "gifted" and talented. I'm sick of not even being able to take a Mommy and Me class because DS is so unpredictable. He is not an aggressive kid at all, and is actually a very sweet, loving boy. He means everything to me. I just wish I knew how to move forward and not worry so much. I wish I knew that my DS was going to be okay and function fine in life. I am just so sad right now.

Re: Having a really hard time...

I'm so sorry you are going through this - if you ever need any questions answered, please FM me and I'll see if I can help in any way!!!

Re: Having a really hard time...

Thank you

Re: Having a really hard time...

I feel the same. I feel in limbo not knowing.

I don't where to put DS next year. Typical school with SEIT or specialized school. I can't do the typical classes. DS is all over the place.

The hand flapping was "acceptable" at 18 months but now that DS is 2+ people are starting to stare.

DS only has playdates with typical children. I feel that I have to justify DS sometimes. I feel it's really "me" who has issues. So I keep doing the playdates. We end up all enjoying them in our own ways.

I know what DS does or does not do. It's not "obvious" for others as much as for me because I know when he does not say "hi" to someone in a store he is not like typical children. I get frustrated. I hide it from DS. I cry a lot. I am lost a lot. Then I shake it out because I don't have a choice. I must be strong and keep the momemtum for DS. He needs me to be consistent even if I don't know where all those therapies. The huge amount of hours all of this takes.

Re: Having a really hard time...

I work in the field and I'm also a new mom to a 3 month old DS, so I feel like I really get what you are saying. It sounds like you are doing everything you can for your little boy. Intervening at this early age is the very best thing you can do.

I can't imagine how difficult it is, but just try to be open to the CPSE evaluations. They are what they are, especially with children so young. If your DS struggles to focus during the evaluations, we take that with a grain of salt. For example, on the IQ test, his score may not be a true reflection of his ability due to his distractibility (neverminding, testing with kids so young is not too terribly predictive of their true later ability anyway). The evaluators can distinguish that from a child who is sitting and focused, but struggles to correctly answer the questions. They just want to figure out where he is struggling and what his strengths are to help him learn.

From what you said, it sounds like your DS did better following directions when movement was incorporated in the dance class. That may be what he needs now in order to help him focus and learn.

Message edited 10/10/2009 9:07:58 PM.

Re: Having a really hard time...

i also have the same fears and was actually going to post a similar topic but never have time. i'm worried that my ds will not get the services he needs when he transitions in 6 months to cpse b/c feeding and sensory usually don't qualify you alone and thank G-d that is his main problems.

if you ever need to talk feel free to fm me any time. i'm also a spec. ed. teacher.

Re: Having a really hard time...

Posted by Chai77



From what you said, it sounds like your DS did better following directions when movement was incorporated in the dance class. That may be what he needs now in order to help him focus and learn. [/QUOTE

Thanks! I think the dance class was far less stimulating, meaning there weren't a lot of things to see and do upon entering the room. The gym room, however, had a ton of colorful mats and climbing devices, a ball pool, etc. DS didn't want to sit and sing songs, even though he loves that, he wanted to climb and play! But even though he is still only 2, I want him to learn how important it is to follow a direction.

Regarding the IQ tests, I know to take them with a grain of salt at this age. Ironically, I administer them for a living. However, when it comes to DS, it's hard not to think about that score. I really do think he has the cognitive skills. The ped neurologist that we saw thought DS was very bright. But I'm still very nervous.

Thank you everyone for your input! I'm just trying to take everything day by day. I have seen such a positive difference in DS and he truly is able to take in what he learns. But some days (for me anyway) are harder than others.

Re: Having a really hard time...

My DS will also be 3 in Jan!
I can put myself in your shoes I think.
Please if you want to "talk" FM me!

Re: Having a really hard time...

I TOTALLY feel your pain. It is so hard to see what other kids are doing and what Christopher is not there yet. I have been able to handle it and accept it more and more when I see the progress in "him" and see what he CAN do and build from there. It is also so hard because Christopher has a twin who is typical and very tough because I can sit and play with matthew in longer periods than Christopher because he is all over the place.
We are all here. We should all have a GTG and let the kids do whatever the heck they want

Re: Having a really hard time...

I know exactly how you feel. Periodically I go through periods of "why me??? Why can't she just be like other children her age?"

He will be fine and so will you!

Re: Having a really hard time...

Posted by LoveBeingMrsT

i also have the same fears and was actually going to post a similar topic but never have time. i'm worried that my ds will not get the services he needs when he transitions in 6 months to cpse b/c feeding and sensory usually don't qualify you alone and thank G-d that is his main problems.

if you ever need to talk feel free to fm me any time. i'm also a spec. ed. teacher.

Re: Having a really hard time...

Posted by avamamma

Posted by LoveBeingMrsT

i also have the same fears and was actually going to post a similar topic but never have time. i'm worried that my ds will not get the services he needs when he transitions in 6 months to cpse b/c feeding and sensory usually don't qualify you alone and thank G-d that is his main problems.

if you ever need to talk feel free to fm me any time. i'm also a spec. ed. teacher.

Feeding and Senory Issues are Ava's biggest problems. She just started kindergarten, and even with a diagnosis, they will not give her services.

Re: Having a really hard time...

I understand how you feel

We are getting so much progress everyday that it is so amazing. However, anytime we have playdates, etc. i get slapped right back into the reality that DS is still special needs. Following directions is still lacking. I could and would never sign him up for a class because I know how it would turn out and would greatly upset me. And how selfish is that? Because I know he would probably love it! However, he is in f/t daycare and is doing great so it's not like he doesn't have interaction.

I don't know what the future holds for us. We have 9 months until district comes in. And less than that before the evaluations come into play. I can cry at the thought of him not having Laurie, my angel here on earth (his main therapist).

I'm trying to just stay positive. I find that more often than not I'm gushing with pride on how much he is learning. But there is still that funk of not knowing.

Re: Having a really hard time...

I know it is really hard. I have been there with Jacob. But I am here to tell you that there is light at the end of the tunnel.. Jacob has had services since he was 18 years old. He will be going through CSE this year and I am hoping that he will be declassified.

Jacob is a completely differnet child. He just turned 4 and I saw the transformation of the him last May. It is unbelievable... I do believe that all of his therapies have helped tremendously but I think he just is maturing later than other kids...

My mother told me that there is a big development growth during the summer from the 3's to the 4's.. Of course I didn't believe her since Jacob was impossible, had focusing issues, sensory issues, social anxiety etc... I can now says she was right for us... Jacob has blossomed. He loves going to school, he listens and follow directions, participates in activities, is socializing with other children... I couldn't be happier. Does he have his moments where he gets fustrated, yes but it has become much easier to deal with it..

It is okay to worry, I sure did but there is hope for all of us!!

Re: Having a really hard time...

Thank you all again ! Today I was off from work and was home with DS. He had a great day! We went to Macy's and later Sleepy's to get DS a big boy bed. We went to Vincent's in-between with my Dad to eat lunch and DS did great!

His allergies are acting up so that doesn't help. I notice a significant change in his behavior with the allergies. We just started Claritin again so hopefully that will help.

Many of you have given me such uplifting stories. I truly appreciate it. It gives me a lot of hope!

Re: Having a really hard time...

Allergies really do have a huge affect on behavior.

Also, some of those mommy & me places are extremely over stimulating. My son never did well in My Gym or Gymboree. We did find a great place in Babylon that he loves. If you live in that area FM me and I will give you the name.

Hang in there!

Re: Having a really hard time...

I totally understand. It's so hard when they are not up to the same activities as children their age. Our family is very close and we see eachother alot and all of us have children between 1 and 5 and it is so hard seeing them play and enjoy activities that DD just doesn't. Sometimes the 1 year olds do things that DD hasn't even mastered yet and it makes me so sad.

But I try to not compare her and as long as I'm seeing progress I'm happy. It is still frustrating though because there are certain things DD can't stand (due to her sensory issues) and very one thinks I'm just babying her

Our latest battle was just this week. DD is turning 3 and she does not like people signing in unison (I think it gets too loud for her) so I banned signing Happy Birthday because she'll cry. Well that didn't go over to well and everyone thinks I'm nuts but it's her birthday and she doesn't need to cry just because the adults want to sing a song.

Re: Having a really hard time...

Posted by KarenK122

I totally understand. It's so hard when they are not up to the same activities as children their age. Our family is very close and we see eachother alot and all of us have children between 1 and 5 and it is so hard seeing them play and enjoy activities that DD just doesn't. Sometimes the 1 year olds do things that DD hasn't even mastered yet and it makes me so sad.

But I try to not compare her and as long as I'm seeing progress I'm happy. It is still frustrating though because there are certain things DD can't stand (due to her sensory issues) and very one thinks I'm just babying her

Our latest battle was just this week. DD is turning 3 and she does not like people signing in unison (I think it gets too loud for her) so I banned signing Happy Birthday because she'll cry. Well that didn't go over to well and everyone thinks I'm nuts but it's her birthday and she doesn't need to cry just because the adults want to sing a song.

Re: Having a really hard time...

I have a 5 yr.old on the spectrum who is non-verbal. I can totally relate and understand your pain. The only advice I can offer is that know your a great mom and your doing what you can for your child. It's nice to know that we can all come here to share.

Re: Having a really hard time...

Your DS sounds a lot like mine.

Ry is 3.5 now, but when he was turning 3, going through evals was hell to say the least (not wanting to focus or listen), the endless paperwork, endless discussions about what he cannot do and how delayed he is... it can be too much to handle sometimes.

You are not alone and it does get easier. He sounds like he is making real progress and what really helped Ryan get past a lot of those things was him just getting older and maturing. Right around him turning 3 was honestly the hardest time for us yet and it has gotten so much better.